The Scoop on Dan

Resting After Cycle 2

2012-02-07T10:46:00.003-07:00

I finished cycle 2 of bendamustin/revlimid last week and am now in my recovery week. We continued to progress, albeit not at the rate of the first cycle. Iggs dropped another 300 points, down to 3800 from 4100. M spike is at 2.6, down from 2.8. The 3 weeks of being on chemo is challenging and mostly exhausting, causing me to sleep more than I thought possible. Still making 3 to 5 visits a week to the clinic/hospital for blood checks and transfusions.

You may recall that I had to undergo radiation treatment last November due to an "impending" fracture of my left arm--the top of the humorous near the shoulder. Well, sometime in the last 6 weeks my arm broke, completely fracturing. Is that why it continued to hurt? Anyway, in my condition surgery is not an option so I've got the arm in a sling for the indeterminate future. As if I don't have enough issues! And I continue to be without driving privileges.

It seems that life has slowed to a crawl. The effects of the chemo and cancer combined with the treatment regime and transfusions leave little or no time for living. Susan is bound up in all of this and I feel so sorry for her as she has to take me everywhere as well as watch me as I struggle with the entirety of that I've been given to deal with. The girls are great support for both of us. Catherine checks in regularly and Julia drops by at least a couple of times each week as well as helps in getting me to appointments when she can.

The progress with the new drug is promising and has lifted our spirits a bit. We continue to be grateful for all the support of our friends and family.
Love,
Dan

A Stunning Start to 2012

2012-01-05T19:42:00.002-07:00

Received results of last week's blood work. For the first time in at least 18 months, maybe longer, my IGGs have taken a hit. They dropped from 7700 to 4100. The best we've been able to accomplish since I was at MDAnderson was stability. I don't remember any reduction of disease levels since February 2010. I was so surprised that tears came to my eyes as the fight over the last 2 years seemed to be released, at least for a moment. Man, this has been a rough road and it seems that all we're looking for is the smallest progress to keep us going. The regime that has brought down the IGGs is a concoction Rifkin, my doc from MDA who is now at Sloan/Kettering, and a few of their colleagues. No set protocol, just a combination they thought might work: bendamustin, revlimid, dexamethasone, supplemented with numerous transfusions and neupogyn shots. Rifkin is reserved about the results, knowing how difficult my disease is, but nonetheless, we'll start cycle 2 on Monday.

I've become good friends with all the nurses at the clinic and the news of my progress burned through the halls today and I was hit with numerous good wishes from all the nurses who have taken care of me these past years and who have expressed much concern about my well being as we went from one trial to the next, hoping to see some progress.

Julia was with me when I got the news and she, too, showed emotion and relief. When we called Suz all she could say was Oh My God, OMG, OMG.

And so we continue forward. The next month will be spent primarily at the hospital/clinic since the drug combo hits my blood counts pretty hard and I'll need numerous transfusions. My situation is delicate and that's probably why Rifkin is guarded in his reaction. He has done a marvelous job working on the myeloma while at the same time preventing me from getting sick.

We are very grateful for all your support.
Peace love light
dan

2011-12-20T17:29:00.002-07:00

I've had some difficulties posting on the blog but believe I've finally solved the problem so here's the update. As noted earlier the carfilzomib made me pretty sick and just when I had prepared myself to talk with Rifkin about withdrawing from the trial he told me it wasn't working and we had to switch. Fortunately there was another drug on the shelf--bendamustin, which I started 2 weeks ago. I get 2 infusions every 3 weeks, along with dexamethasone and revlimid for 21 days straight. These drugs push my red cells, white cells and platelets down in the nether regions. That in turn necessitates trips to the hospital for transfusions, at least on a weekly basis. I typically am at the clinic/hospital 5 to 7 days a week. Quite the life. Of course, since I can't drive due to my messed up arm, Susan has to drive me to all appts., and sit and wait as I get treatment. I think her role in all of this is worse.

My left arm is healing, albeit very slowly. I can touch my left finger to my nose! Reminds me of which, as kids, we used to try to touch our noses with our tongues. I couldn't do that either.

I wish I could paint a different picture, but we're dealing with some very difficult issues. It seems there aren't any treatments left. It's all complicated by my nonfunctioning bone marrow. From my perspective it is extremely frustrating as I would do anything to keep going. So we let the bendamustin treatment shine a ray of light and keep us moving forward.

Peace, light and love to all.
Dan

Carfilzomib Bites the Dust

2011-12-03T16:38:00.003-07:00

Visit with Rikin this week. I've built up anxiety about my need to discuss continuing the carfilzomib trial. The drug has been very hard on my muscles and bones. But Rifkin is three steps ahead of me. He's already concluded the drug is not working and has an abstract of another new drug he wants me to start on (bentamustin). My Doc from MDA who moved to NYC talked with us about that drug when we were in NYC in August. It's new in its application to myeloma, but has shown some success in treating lymphoma. Since giving it to me would be "off label" we have to get preapproval from my insurance company. Off label merely means it would be used for a purpose other than that approved by the FDA--treating myeloma rather than lymphoma.

The last month I've had to deal with a significant lesion in my upper left arm. The lesion is a result of the myeloma eating away at my bones. Cancer cells essentially replace bone, making the bones weak, to the point of fracture. That was the concern as they xrayed my arm, put me in a sling, and subjected me to 5 days of radiation to kill some of the myeloma and make way for bone growth. Getting on and off the steel table for the radiaion treatments was the most difficult part of this, given my messed up back. But, like all these treatments, I survived and am very glad that is over.

These are difficult times as we continue to search for some longer term relief and try to ignore my decline as well as the short list of new drugs that might be available.

Thank you everyone for your continued support.

Love,

Dan

Bone Marrow Results

2011-11-06T10:31:00.003-07:00

Bone marrow results are in. Best I can describe them is mixed. There has been no progression of the disease over the 2 months I've been on carfilzomib. There also has been no reduction in the disease levels, i.e., no response. Absolutely Stable are the words Rifkin repeatedly used. That means two more cycles of carfilzomib (2 more months). In the meantime Rifkin is looking for the next drug should I continue not to respond after two more cycles. He's seeking expanded access on pomalidomide and is investigating a new drug that has shown much success in treating other blood cancers. We're also trying to deal with my bone pain, nerve pain, and weakened muscles, whether caused by the drug or the myeloma. Not so much fun. It seems that the rest of the time I'm at the hospital getting red cells and platelets. But I'm not complaining; I'm glad to be alive and to have a doctor who refuses to give up and mostly for those many friends and family members who keep me going every day. Thank you.
Dan

Starting Cycle 2

2011-10-09T17:43:00.002-06:00

I had essentially 2 weeks off between cycles. In those 2 weeks my back went into serious spasm. I attributed it to coming off the steroids and expected it would improve before I started the second cycle. No such luck. The burning pain radiates around from the back through the lower ribs and also through the chest. Xray on Friday reveals no change from previous films except more arthritis. Fortunately this eliminates the concern about spinal cord impingement but doesn't answer the cause of this latest limitation. Trying to use pain killers but so far vicodin and percocet don't touch it. My own analysis is its pinched nerves from the multiple compression fractures.

Started the second cycle of carfilzomib this week, Thurs and Fri. I don't notice many side effects other than the fatigue. But the chemo hits my blood counts hard (red cells and platelets) which cause me to go to the hospital for multiple transfusions. For example, I received chemo Thursday p.m., then blood and platelets on Friday morning, went to the clinic for another dose of chemo and discovered I needed another 2 units of blood. Back to the hospital and another 12 hour day. Same thing happened 2 weeks ago. Julia and Bob have given up their Friday nights to bring me dinner on these Friday nights and keep me company. Very sweet.

No news on whether carfilzomib is working. Should know by late October/early November.

Dan

Light the Night plus Carfilzomib Update

2011-09-15T16:33:00.002-06:00

LIGHT THE NIGHT

As many of you know the Light the Night walk for the Leukemia and Lymphoma Society will take place Thursday, Sept. 22 at Wash Park in Denver. All walkers on my team are invited to a prewalk party at Darin and Liz Schanker's home, 818 S. Franklin, directly to the east of Wash Park, sponsored by Darin's law firm, Bachus and Schanker. The prewalk party starts at 4:30 p.m. and the walk will start around 7 p.m. Please come out and walk to help bring awareness to the need for a cure for blood cancers. Donations can be made at

http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN

In the four years that I have participated in the walk we (you!) have raised more than $89,000. That is a huge amount of money for one team to raise. I am very grateful for all of your support over the years. The monies go to blood cancer research, patient services and financial assistance for patients.

CARFILZOMIB

I have been the beneficiary of a number of new drugs that have been developed with the help of LLS research monies. Velcade was one of those drugs. Carfilzomib may be another (not sure). These research monies are critical because 1. drug companies do not typically become involved in initial research but rather wait until drugs show promise through government or private funding before they become involved, and 2. many blood cancers, especially multiple myeloma, become drug resistant and therefore new drugs are necessary to keep the cancer in check.

I started on carfilzomib last week. I receive 2 doses a week, along with dexamethasone. Carfilzomib is similar to velcade, i.e., a proteinase inhibitor, with the benefit of showing efficacy after velcade has failed. That being where I am: velcade no longer works on me. Carfilzomib is about the last drug out there for me so we're keeping our fingers crossed. I'll have bone marrow biopsy the end of October to measure the progress. So far, no significant side effects.

My blood counts have been so low, particularly my platelets that I've had a series of nosebleeds. The last one lasted more than a week (yes, 10 days) and required packing my nose for 3 days (not fun) and even that didn't work. Monday's transfusion of blood and platelets seems to have put an end to that nonsense. Ever try walking around with a balloon in your nose and a tube coming out of your nose and taped across your cheek? I wouldn't recommend it.

Hope to see many of you on the 22nd at Light the Night. Thank you again for all you have done and continue to do for my family and me.
Love to all of you,
Dan

New York City

2011-08-19T22:36:00.005-06:00

Returned last weekend from our trip to NYC. Saw Catherine finish her second triathlon. Very cool. Had tentatively planned much more than we were able to do. Rifkin got nervous about my being gone and arranged for me to be seen at Sloan Kettering by my doc from MDAnderson who moved to Sloan last year. Ended up making four visits to Sloan, including a platelet transfusion, forcing us to cancel some plans and not follow up on others. But, true to form, once John Sadwith heard of my vacation being spent at Sloan he and Friends of Dan (FOD) came through at the last minute with tickets to The Book of Mormon---the most hysterical musical I have ever seen. John and FOD are incredible. These tickets are impossible to obtain but John knows no limits. Susan's cousin, Arlene, and her husband Jim, drove down from their home up on the Hudson to pick us up at the airport, watch the triathlon, and then came down to take us to the airport when we left. They have been fantastic.

We talked with my former doc at Sloan about treatment options. He agrees with the plan to put me on carfilzomib. Unfortunately, he didn't have any clear ideas about a plan B. He noted that there are a number of drugs in the works, but we know how slowly that process moves. I've been waiting to get on carfilzomib since early June when it supposedly was fully approved for my use. Rifkin thinks maybe by the first week in September all approvals will be in. Meanwhile, I've been taken off vorinostat and am just on velcade and prednisone. Not sure how this is working, but suspect not too well. The IGGs were rising before I went off vorinostat and I'm getting blood or platelet transfusions every 5 to 7 days. Before starting carfilzomib I'll have to go through the full battery of tests. I think I would prefer not to know the details of what is happening in my bone marrow.

I've signed up for Light the Night again this year. It will be held on Thursday, Sept. 22, at Wash Park in Denver. As noted earlier, Darin and Liz Schanker will be hosting a prewalk party at their home (see blog at July 31, 2011). We would like to see a good crowd at the party and at the walk. You don't have to donate to join us for the festivities. If you're interested in donating, however, here is the link to my fundraising page:

http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN

I'm sure you're all tiring of my fundraising over the years. I have to emphasize that the research that the Leukemia and Lymphoma Society has funded over the years for blood cancer research has been critical in the development of a number of drugs that have kept me alive, including velcade. Most of you know what my family and I have gone through over the past six years. Your small donation would be a small price if we could save even one family from the trauma of a blood cancer.

I hope to see you at the walk on Sept. 22 (prewalk party at 5:30, walk starts at 7 p.m.)
Darin and Liz would like some idea of how many people to expect for the prewalk party, so if you're planning on attending, perhaps you would send me an email indicating your planned attendance: dwpmediator@yahoo.com. I'll post Darin's address once I get it.

Dan

A Quick Update

2011-08-04T10:25:00.003-06:00

It seems that I no sooner posted my last blog when things changed. Briefly, saw Rifkin today. It seems the new regime is not working as the IGGs have moved up to 7500. Still waiting for the final regulatory approval for my use of carfilzomib. Rifkin is calling them regularly to get them moving and has been assured his clinic is a top priority, but so far the FDA hasn't finished their review of the facility. Rifkin also became a bit nervous about my trip to NYC and called Memorial Sloan Kettering and immediately got in touch with my former doc at MDAnderson, who is now head of the Sloan transplant unit. Anyway my old doc was most gracious, agreed to bring me in as a new patient, check my blood counts, and see me, transfuse me if necessary and share any ideas he has for treating me. I certainly can't complain about the way my docs are treating me and in fact, am most grateful. Anyway, we're still on for NYC, although in keeping with my schedule here in Denver, I'll spend some of the time at the hospital. That travelogue of the best cancer centers in the U.S. seems to have real potential. This will be my 5th facility. One more achievement I never had aspirations for.
Dan

Cycling

2011-07-31T21:07:00.004-06:00

Unfortunately that title doesn't refer to bicycling. Rather, I'm going into my 3rd cycle of the new drug combo of vorinostat and velcade along with my every other day prednisone. We still don't know whether this regime is taking down the myeloma. But it has, at least, stabilized the IGGs just below 7000, where they've been hovering for more than a month. That's still way too high but at least they're not moving upward. This regime is a bit more challenging, mainly due to the increased fatigue. The drugs also hit my blood counts pretty hard, driving down the red cells and platelets. Those low counts have resulted in my needing four transfusions this past month and tomorrow I'll be getting my second one this month. Rifkin has decided not to subject me to another bone marrow biopsy, telling me that my marrow is packed with myeloma, which also causes the blood counts to go down.

So what do I do when I'm not at the clinic/hospital? Still riding the bike, although the heat wave is keeping me inside more often than I would like. I also manage to mediate a few cases each month, which I continue to enjoy. Lately we've been dealing with our flooded basement--the fourth time in five years; and we've had contractors in 3 times to fix it, which they're apparently not capable of doing. We welcome all recommendations.

I want to thank all of you who contributed to Catherine's triathlon run for the Leukemia and Lymphoma Society. She has raised $5000, almost twice her goal of $2600. Given Catherine's phenomenal fund raising, I've decided to participate in the Leukemia Society's Light the Night walk. It will take place in Denver at Washington Park, with the walk starting at 7 p.m. on Thursday, Sept. 22. I am inviting all of you to participate in the walk. Large numbers of walkers bring awareness to the public of the numerous people afflicted with blood cancers. Darin and Liz Schanker have offered, once again, to host a prewalk party at their home on the east side of Washington Park. Darin's law firm, Bachus and Schanker, has been a strong supporter of the Leukemia Society in the past and want to continue their support. I will provide more details on the prewalk party schedule as we get closer to the walk. Also, if you missed the opportunity to contribute to Catherine's triathlon, your contribution to Light the Night would be greatly appreciated. The link to my web page is:

http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN

Rifkin has carefully scheduled my treatment and transfusions so I can make the trip to NYC to cheer Catherine on at the finish line in Central Park. Simply put, the plan is to load me up with blood and platelets just before we leave, discontinue any treatment, and then resume when we return. I think they call this blood doping.

That's all that's happening at our household. I hope you are all enjoying your summer. And wherever you live, the heat wave will pass. Yes it will.
Dan

The Triathlete

2011-07-05T10:29:00.002-06:00

No, that would not be me. That would be my daughter, Catherine, who is in training for her second NYC triathlon. This is again being run under the Leukemia and Lymphoma Society's Team in Training fund raising effort. Each participant pledges to raise $2650. While Catherine has been training she has not been fund raising and in fact hasn't gotten around to spreading the word. So, once again, for those generous souls out there, here is the link to her fund raising page:

http://pages.teamintraining.org/nyc/nyctri11/catherine

Regardless of whether you intend to donate I encourage you to read the short intro on her page. It provides some insight into her experience over the past 6 years.

And for those who want to support the cause, the LLS is key to supporting blood cancers, such as myeloma. They provide significant funding for drug development, such as velcade, which keeps people like me alive. They also provide a lot of patient support services as well as financial assistance for those in need. LLS is a fabulous patient oriented, patient advocate organization which is committed to finding a cure for this nastiness. Any amount will help. The Team in Training is another of its fund raising activities, like the Light the Night walk I have supported over the years. Ultimately the funds all go to the same place to help blood cancer patients. Thank you in advance for your support of Catherine's triathlon.

I'm off chemo this week, start my second cycle next week, and should have some numbers in 2 weeks. The chemo was tolerable, but I'm glad for a week's break.
Dan

Here We Go Again

2011-06-18T12:50:00.002-06:00

Regime change coming on Monday. The consensus recommendation of Rifkin and his colleagues at the last ASCO meeting (American Society of Clinical Oncology) is to put me on a regime of vorinostat and velcade along with my every other day prednisone. Vorinostat has been around for awhile but hasn't been used extensively in treating myeloma. The results from a few trials, however, are quite promising. It is an HDAC inhibitor which appears to enhance the efficacy of velcade, even in patients who have become resistant to velcade. Histone deacetylases are a class of enzymes that interfere with certain proteins. When given with velcade it has been shown to increase cancer cell death. The clinical trials in which it has been tested have generally included patients who have had extensive treatment, like me. So, this starts on Monday. I take vorinostat orally for 2 weeks and during that 2 weeks I go to the clinic twice a week for velcade shot. Then a week off and start the 2nd cycle. This will continue as long as I can tolerate the drugs and we are making some progress in reducing the myeloma. Rifkin decided to go on this course because it appears the final regulatory approval for open access to carfilzomib will take some time and I don't think he was comfortable delaying treatment for me. I agree.

I'm schedule for another bone marrow biopsy in a week to determine state of my disease. I doubt much has changed because I have difficulty holding my red cells and platelets. I attribute it to the bone marrow being packed with myeloma. I've had 2 transfusions in the last 2 1/2 weeks, the latest being yesterday. But that hasn't stopped me from riding my bike daily. I now log between 15 and 20 miles and have my sights on 30 miles (did 22 miles this morning--day after the transfusion. Blood doping works!).

I feel like I've finally recovered from the cytoxin onslaught and my days feel busy, even though they are quite slow in comparison to all of your busy lives. But it's nice to have the energy to get out and ride the bike or go out to lunch or even to an occasional baseball game. I've wanted to go out to NYC to visit Catherine but Rifkin still has me on the no fly list, so Catherine will be coming home in a few weeks for a short respite in the mountains with the family.

Best to all and Happy Fathers Day to all you Dads.
Love,
Dan

Diet, Drugs, and Herbs

2011-06-01T21:07:00.002-06:00

The prisoner (me) has been given a temporary release from house arrest. Nine days without going to the hospital or clinic feels like a vacation. And I don't have to return until next Monday for lab work. Blood counts were good today. White count 3.1 (NORMAL, which is unheard of for me. Platelets up to 58--not near normal but clearly on the rise. Hematocrit and hemoglobin were 8.2 and 24, which would usually mean a transfusion. But today Rifkin gave me the option. Hmmmm. Spend a day at the clinic getting 2 units of blood or go home, go for a walk, etc. Not even close. The doc thinks the red cells will go up over the next week and I decided to make my bone marrow do a little work. We'll know on Monday. I'm still in line for the new drug, carfilzomib, to be given under "beneficial use." Rifkin estimates 30 days before the final paperwork is processed. We ended the exam with him accessing the internet to see what info he had on a new drug I asked him about: ACY-1215. For those in the now, this is an HDAC inhibitor. A new stage 1 and 2 clinical trial is beginning at Dana Farber in Boston. He promised me he would return from his latest conference this week with more info. Then he asked me to do a review of new convection ovens, given my apparent proficiency on the internet.

I am wondering whether my new diet has anything to do with my normal white count. I have drastically reduced my consumption of beef, pork and chicken (not totally eliminating it as I need some red meat for my red cells). I also am drinking a daily juice cocktail of carrot, apple and beet juice--recommended by my mother. And I'm taking a whole host of herbs and roots, which I compiled from a variety of resources I've acquired over the years: curcumin, Omega 3, 6 and 9, flaxseed and olive oil, selenium, red clover blossoms, yellow dock, burdock root, vitamins D, B-6 and B-12, and probiotics. Whoa! Susan wonders whether this is too little too late. I say it's just in the nick of time. Whatever. My energy and white count are up.

Had a nice weekend. Brother Mike (the donor) came for a short visit. We took in a Rockies game and had a relaxing weekend just catching up. So that's the status.
Best to all of you.
Dan

Perhaps We're Leveling

2011-05-26T14:13:00.002-06:00

Saw Rifkin on Monday and reviewed blood work, blood counts, kidney and liver function, and myeloma markers. Counts are holding although drifting downward a bit. He thinks/hopes I'm ready to start my full scale recovery from the double dose cytoxin and the counts should start to hold or go up. Kidney and liver are working fine. Myeloma markers have drifted up, but at a much slower pace than previously. Again his hope that the cytoxin has slowed the myeloma and that it will stabilize, if not go down, with the prednisone therapy I'm on. Better report than 6 weeks ago but still not out of the woods. New bone marrow is not scheduled. We're waiting for the paperwork for the new drug, carfilzomib, to be processed so I can start on that. Maybe in 30 to 45 days. Rifkin has started to loosen up on the socializing restraints he's placed on me. Now, it's as much about my energy as avoiding exposure to large crowds. I did manage to go to my first Rockies game, hoping to end their losing streak. No such luck.
Please have a relaxing Memorial Day.
Love,
Dan

The Truth Be Told

2011-05-15T21:28:00.009-06:00

I guess it's time to come clean and provide a bit more detail about the latest bone marrow tests and chemo. A couple of minor things first. I'm doing OK now. Still have an uphill fight, but still fighting. Second, a couple of comments disappeared from my last posting. To the bloggers who put those comments there, please understand I didn't erase them. I have no idea what happened but one day they weren't there. Cyber ghosts.

Now for my coming clean. My last bone marrow biopsy was March 31. Next one will probably be in a couple of weeks. The last one was more troubling than any previous ones. Per Rifkin, my disease is raging mad, worse than its ever been. I did not expect the news would be good, but it was worse than I could have imagined. Below are a few of the findings from the bone marrow report.

--Plasma cells 93% (normal is 5% or less). These are the cancerous cells. Many atypical forms present. My plasma cells were at 90% a couple of times previously. Before the transplant in Little Rock and before the transplant in Houston.

--Some background: Healthy people have 46 chromosomes (for males that consists of 22 pairs and an x and a y chromosome). When I first went to Arkansas I had 46 normal chromosomes, which was an improvement from when I was first diagnosed where I had a couple of chromosomal abnormalities. The improvement was thought to be the result of the velcade treatment.

--I now have 52 chromosomes; the extras being clones. Now that's a scarey thought. Me cloning myself. So I said to myself, "self, what's with these extra chromosomes...?" Now seriously, having more chromosomes than 46 is better than having less. I haven't figured out why, but then more is usually better than less in most things in life. These multiple chromosomal abnormalities often appear in the more advanced later stages of myeloma. Not good.

--My M spike (the level of M protein) in my blood is 2.8 (normal being 0). It has been much worse (4.4), but Rifkin attributes the lower level to the myeloma not being as productive in producing M protein, which only means the M spike and IGGs aren't going to be that good in projecting the stage of my disease.

--M spike has now appeared in the urine. Not good. This hasn't been found before and is another sign of the advanced stage of the disease.

Rifkin spoke with a number of his colleagues around the country, including my doc at MDAnderson and the consensus seemed to be the high dose cytoxin--maximum 2 treatments. Because of my languishing white count I was hospitalized for both of the cytoxin treatments. I handled those quite well, as I have most of my high dose chemo. That being said, I'm not optimistic about the cytoxin bringing the myeloma down to any significant degree. This is an alkaline based drug, as have been all of my high dose chemo treatments (5 thus far, including the 3 that preceded each of the 3 transplants). My body has not responded to any of these treatments. Despite my repeated objection to such treatments, following the failure of my first transplant, each doctor has had an explanation why this time it would work. Wrong. My doc at MDA told me candidly they have no other drugs that will wipe out the cells as effectively and let the body start over--even if the drugs don't wipe out the cancer cells. So they filled me with cytoxin. Bone marrow in 2 weeks or so will tell the tale.

Now, with all that I'm not hang dogging it. It has been difficult for my family, mother, brothers, sister, brother in law and those close friends who know the full story. But you know me, ever the optimist, the problem solver, the enjoy each day kind of guy. So, while we're preparing for the worst I'm working on solving this problem myself. I'll do most of what my doctor says, but being a problem solver, I've decided I need to figure this out for me. So I've delved into the details, so to speak. You naturopaths will appreciate this and any suggestions you have will be appreciated.

I am on a daily routine of carrot, beet and apple juice. Curcumin. Triple Omega (flaxseed, omega 3,6,and 9, and olive oil). Pro biotics. Vitamin D, B-6, and B-12. Some of these I've been on for awhile. I have always had good results with steroids and am on 50 mg every other day. The steroids boost the chemo and I figure they could boost the effects of these natural vitamins, antioxidants and the like. Curcumin has been discussed in a number of myeloma blogs over the years and more recently has shown not only an ability to increase the effects of antibiotics, but also the death of cancer cells.

And now let's wind up this long post. I understand a few things. First, we never know what is going to happen. The doctors don't know. I don't know. No one knows. So there is no need to fast forward to an unknown outcome. Things will happen as they are supposed to. I firmly believe at any moment in life everything is as it should be. If it doesn't feel right it is only because of my perceptual limitations. I am at peace with whatever happens. Second, having recovered from the high dose chemo, I don't feel much different than before we got the news from Rifkin. My main problem is fatigue. I'm waiting for the weather to settle in to nice spring/summer weather so I can ride my bike, take walks, go on picnics with Susan, and continue to enjoy life. And finally, I don't have the words to express the depth of the gratitude I feel for each and every one of you in my life. I love you.

Dan

Tough Sledding

2011-04-29T12:08:00.002-06:00

Growing up in North Dakota my friends and I had plenty of time during the winter to enjoy our winter sports. Sledding was a favorite. We each had our Radio Flyers and would often race down the alleys or bulldog each other as we raced to the end of the alley, hoping to stop before sliding into the street. Bulldogging consisted of sliding up next to another sled and jumping off your sled on top of your friend who was riding his sled. The best bulldoggers could actually steal the sled by pushing the other person off and send him rolling into the snow and ice while riding the stolen sled to victory. It was some tough sledding, especially when competing with a big guy named Duke, who was an expert bulldogger and sled stealer.

I'm hoping those sledding times have toughened me for the latest rounds of treatment. The myeloma has reared its ugly head once again, filling my bone marrow and leaving little room for the good white and red cells. I'm undergoing my second round of high dose chemo (cytoxin) today, in the hospital in Denver. We'll check the progress in a couple of weeks, after I recover from the chemo and then make a plan for the future. No one is suggesting this high dose chemo is going to kill off all the myeloma. The hope is to make a dent so we can use some more traditional chemo that at the present time the docs don't think will work because of the high levels of disease. We are looking at the new drugs, carfilzomib and pomalidomide, but my eligibility for the clinical trials of those drugs is questionable given all the treatment I've had, particularly the allo transplant. There are a few other alternatives that we'll evaluate once I'm through this regime. I am limited to just 2 doses of cytoxin because of its toxicity, so regardless of its effectiveness, we'll have to find another drug soon.

We had a crowd of family for Easter: Susan's brother, my brother Tom, my sister and her family, Julia and Catherine along with a few other friends. Rifkin had carefully orchestrated my recovery from the first high dose chemo so I could participate, which was nice. Lots of love and laughter. All nurtured once again by a fabulous meal prepared by Susan.

The family is quite vigilant as I go through this treatment since the options are narrowing but we remain hopeful and are always grateful for your love and support.
Love,
Dan

Danny Can You Hear Me?

2011-03-25T16:37:00.003-06:00

Finally, I bit the bullet, or is it the wallet?, and got hearing aids. I've been messing with this hearing loss since returning from Houston and hoping that my hearing would eventually return or at least improve. No such luck. As mentioned in an earlier post, although the hearing improved somewhat in the left ear, the right ear has gotten very bad. So I now have hearing aids on both ears. What a difference. If I had any doubts about needing them, this has erased those misgivings. I'm not sure what I was hearing before, but it couldn't have been much, given what I can hear now. You've all been warned: no more talking behind my back--I can hear you.

The technology on these devices is amazing. This set has 5 separate programs for such differing environments as loud background noise, music listening, close conversation and talking behind my back. Nah, just kidding on that last one. The devices sense the noise level and move to the appropriate program, which then adjusts the device so I have maximum hearing. I don't have to do a thing to cause these adjustments--all done through the chip in the device, which was programmed with a computer at the doctor's office. Installation of these feels like I just took the mufflers off my ears.

Next week is test week. I've got extensive lab tests, bone marrow biopsy and few others to undergo as part of the vaccine trial I completed. They are allowing me to have these done in Denver. I'll also be talking with Rifkin about the next treatment since the revlimid has hammered my blood counts and isn't consistently holding down my myeloma. My M protein has stayed relatively stable, around 2.7, but the IGGs have jumped from 2800 to 4800 to 3800. The bone marrow biopsy will hopefully provide a better gauge based on the degree of plasma cells detected. Regardless, we'll have to find a different drug(s) to bring the myeloma back in submission. I'm not sure what Rifkin has in mind and I haven't even arrived at my own opinion on the matter. He'll probably go into shock when he hears I don't have an opinion.

Although spring is here, it's still a bit cold for me. I'm waiting for temps consistently in the 70s before I get into a regular bicycling routine. What a wuss I've become. And to think I used to winter camp in Minnesota at minus 30 degree temperatures.

March 23rd was the 6th anniversary of my MM diagnosis. Unbelievable. This has been such an extraordinary journey that I can hardly remember what my life was like before cancer. "But that was in another country, and besides the wench is dead." (from "The Jews of Malta" by Christopher Marlowe). March 24 was brother Mike's birthday--let's just say he's not eligible for Social Security but it's not far away. And March 26 marks the 34th year since Susan and I met on our 2000 mile blind date. Lots to celebrate.

Best to all,
Dan

Kickin' My Butt

2011-03-15T20:48:00.003-06:00

If you want to be physically challenged, try exercising with someone 35 years younger than you are. Susan exercises regularly with Julia and manages to stay right with her through a variety of exercise classes, weight lifting, or anything else they might try at the club. I, on the other hand, am prohibited from going to the club because of my chronically low white count. So, Julia and her "friend" Bob asked me to go for a bike ride on Sunday. My first real ride in 2 years. Yes, I rode last year after getting back from Houston, but always in a leisurely manner. Sunday was different. Twenty miles and I was ready to puke. Huffin' and puffin' but I made it. Julia and Bob actually went further while I took a break at the 1o miles mark. But, they got me out and now it's just a matter of doing it regularly.

I had my counts checked on Friday and I am officially neutropenic. My white count is 1.9 and my neutrofils are .9. Nonetheless, Rifkin kept me on revlimid. He said he wants to "push" it to try to reduce my myeloma. I'm all for that. He just warned me to be careful and stay away from crowds. That's fine for now, but once baseball season starts, I've got to be able to get to the ballpark. I continue to reduce my neurontin for my neuropathies. I'm now at 50% dosage of where I was a month ago. The pain and numbness are more noticeable but the clarity of mind is worth it. Neuropathies caused by chemo, such as mine, can resolve over time and I'm hoping some of that is going on as well. Maybe getting feeling back in my feet will help my bike riding.

I also saw my ear doctor on Friday. While the sinus infection has apparently resolved, the hearing has not improved. I will be getting hearing aids for both ears in the next week. The nerves have been damaged from the chemo and my doctor does not believe it will resolve. I've seen as much improvement as he thinks I'm likely to get. While the chemo has obviously kept me alive, the side effects of these toxins have taken their toll. So be it.

Happy St. Patrick's Day, especially to my Irish friend Mari, who has kept me in cards, jokes, sock puppets and many other items to keep me in good humor through these past six years. May the Lord keep you in his hand and not close His fist too tight.

Vaccine Trial Is Over

2011-03-02T18:37:00.005-07:00

No, I've not shut down the blog, although from time to time I think about doing so. I just think you are all tired of hearing about "the scoop on Dan." This has gone on for six years now (on March 23rd). But John Sadwith threatened me with physical harm when I mentioned shutting this down, so on we go.

I just returned from MDAnderson. I have now completed the vaccine trial, having received my third vaccine shot on Monday. They will do the full battery of tests in a month to determine its success. I'm not optimistic about those results, because my IGGs and M protein started rising dramatically about 6 weeks ago, resulting in my going back on maintenance revlimid. That seems to have put a hold on the rising numbers--actually bringing the M protein down from 3.1 to 2.6. My doctor at MDA tells me they will be looking at much more than just the M protein and IGGs to determine the success of the vaccine in a month.

But always being a few steps ahead of my docs, I've already started pressing them for their thoughts on the "long term plan." As always there is no long term plan because it's impossible to predict what condition I will be in down the road. But there are many options available now, including the vaccine made from my M protein, another infusion of Mike's cells, and at least two new drugs that are well on their way to FDA approval (pomalidomide and carfilzomib). The most positive aspect of these discussions is that they always seem to find a drug that I respond to.

With ailments we seem to develop a mindset that generally they can be fixed, we will recover and go on with our lives. That often happens even with some cancers. Then there is this nastiness called myeloma, which gets knocked down but then pops back up--just like me. Hmmmm. Is this a coincidence? For now it doesn't feel like crisis management and that is a relief not to have that hanging over us. Those periods elevate the family's stress level, particularly Susan's. As I think back a year ago, we had just arrived in Houston for the transplant from my brother. That was crisis mode, as my counts were still battered from the Arkansas treatment and a donor transplant (allogeneic) brings many risks. When forced to decide whether to go through with the allo transplant, it really wasn't a choice, as I don't know how to give up. Fortunately, we've navigated those waters for now.

Right now we're dealing with an abysmally low white count (1.7) and a similarly depressed neutrofil count (.9)--these are the really really good white cells that fight disease. So no revlimid for the time being as that is what caused the low counts in the first place. I'll see Rifkin tomorrow and we'll make some decisions about the path forward.

I'm anxious for spring as I don't handle the cold very well. This is the first time in three years we've been in Denver for the winter, although our last two winter vacations to Little Rock and Houston left a lot to be desired.

Best wishes to everyone and thanks for hanging in there with us. We continue to be very grateful for all our family and friends. We love you.
Dan

Too Many Doctors

2011-02-06T12:34:00.003-07:00

Last week was a busy week for my doctors and me. Started the week with a trip to MDAnderson in Houston where I met Mike and we had blood work and then met with my doc, Dr. Q. I was nervous about the visit as my IGGs had jumped to 4700 (normal 700--1600) and M spike was 3.1. My red cells have also been dropping; hemoblogin was at 9.1 the week before. Mike took the job of scrivener so I could have a dialogue with Dr. Q. To state the obvious the stabilizing effects of the transplant have disappeared. I haven't shown any response to the Donor Lymphocyte Infusion (DLI) and vaccine. Despite not showing a response I feared I would be withdrawn from the clinical trial and lose the opportunity to receive the vaccine made from my M protein. So, to cut through it: I have been placed back on maintenance revlimid and am still eligible for the clinical trial. I am "debating" the dosage with Dr. Rifkin. He wants me on 5 mg and I want to be on 15 mg. The higher the dosage, of course, the more likely the myeloma will be reduced. Rifkin is concerned that my white count will plummet, as it has in the past, and he will be forced to take me off the revilimid completely. The proverbial Hobson's choice: Low dose revlimid less likely to stop the growth of the myeloma; higher dose more likely to cause white count to drop. We've compromised at 10 mg. Blame it on the mediator in me.

I asked Dr. Q whether Mike's cells had been "coopted" by me and were now incapable of attacking the myeloma. On the contrary, they still have the potential to take down the myeloma, there is just too much myeloma for them to overtake it at this point. Hence, my push for the higher dosage of revlimid.

Dr. Q also went through numerous other options that would be available if the vaccines and the revlimid don't work. Suffice to say MDA is running a wide variety of clinical trials and it sounds lie there are many options on the shelf. While it is disappointing that I didn't get a longer respite following the transplant, so be it. It is what it is.

My hemoglobin was down to 7.7 when in Houston. Thus, when I returned on Tuesday Susan drove me immediately from the airport to the clinic so I could get my blood "typed and crossed" in preparation for a transfusion on Wednesday. I received 2 units of blood on Wednesday. Drs. Rifkin and Q are a bit puzzled by the drop in red cells and are exploring whether it is Mike's red cells attacking mine. Mike's cells need to focus on my myeloma and leave my red cells alone.

And then there's my hearing. These flights really mess up my ears ever since my ear drum burst last June. Only this time it's my right ear. I saw the ENT (ear, nose throat specialist) on Friday and they've documented nerve damage in my right ear and a severe hearing loss since I last had it checked in August. He doesn't really have an explanation, other than drugs, i.e., chemo and current anti fungals and anti virals. I will get hearing aids eventually, but first would like my hearing loss to stabilize. It goes up, it goes down. I guess I need to stay off airplanes. Not much chance of that.

And on a positive note, it feels like my neuropathies are gradually improving. Fewer shooting pains and less frequent numbness. I've reduced my neurontin by 25% to see if I can tolerate a reduction. That would be good.

Despite all this I don't feel too poorly. Still have multiple issues but am gradually accepting them. I do get frustrated with weeks like last, when I spend most days at the clinic/hospital or in some doctor's office.

I think that's enough for now. The ladies in my life are all fine. Unlike me they are hitting the health club with a vengeance. Catherine signed up this year's NYC triathalon and she seems to be starting her conditioning already. I guess that means we'll be in NYC in August to cheer her on.
Love to all,
Dan

The Royal Treatment

2011-01-16T21:51:00.003-07:00

Susan and I returned from Houston on Saturday and boarded a plane for Chicago on Tuesday to meet with the Board of Directors of The Gateway for Cancer Research --a nonprofit that funds cancer research and which is funding the clinical trial I'm in. The people at the Gateway could not have more generous in taking care of us. First class airline tickets, stretch limo to pick us up at the airport and to take us to our various appointments and then back to our hotel and the airport for our return flight. Our meeting with the Board was scheduled for about 15 minutes but we were there for more than an hour. The Chairman of the Gateway Board, Richard Stephenson, is passionately committed to finding cures for cancer. His commitment comes from his experience with his mother's death from cancer. As a result he founded the Cancer Treatment Centers of America (CTCA), which has 5 facilities around the country. CTCA provides all of the funding for the administrative costs of the Gateway Foundation, thus, 99.9% of funds donated to the Gateway go to cancer research. Even more amazing, the organization (being financially supported by CTCA), funds clinical trials at cancer centers around the country (such as MDA), even though such institutions are competitors of CTCA.

After the Board heard from Susan and me, Mr. Stephenson immediately asked us if we could stay an extra day in order for me to be seen by a variety of specialists at CTCA to see if they could help me with some of the long term side effects I've got from all the chemo. So, we took an extra day, and I was seen by a doctor, a physical therapist, a nutritionist, and a naturalpathic doctor. CTCA has a holist approach to treatment and thus has all these specialists on staff. Without boring you with the details, the doctor provided instant help for some of my back pain and the others had some recommendations we're going to follow up on. Gifts keep falling down upon us for no reason we can think of and we continue to be full of gratitude.

All in all it was a very interesting and helpful trip. Once we got home, I got terribly sick, but am recovering quickly. Fortunately Dr. Rifkin did not hospitalize me despite the very high temp. I'm sure it's just too much travel over the last 2 weeks.

I'll check in after my next trip to Houston, sometime in February.
Dan

Millions of Mighty Mikes

2011-01-09T10:37:00.002-07:00

Are you ready for a biology lesson?
I received 10 million of Mike's T cells on Friday, which were then boosted with a vaccine made from a protein (not my protein) and a white cell booster (GM-CSF--granulyte macrophage colony stimulating factor.) GM-CSF functions as a white blood cell growth factor. GM-CSF stimulates stem cells to produce granulocytes (neutrophils, eosinophils, and basophils) and monocytes. Monocytes mature into macrophages and are part of the immune/inflammatory cascade, by which activation of a small number of macrophages can rapidly lead to an increase in their numbers, a process crucial for fighting infection. (A T-cell is a type of infection-fighting white cell in the blood. Its normal role is to kill virus infected cells and some cancer cells. )

However the body doesn’t have enough T-cells to combat large cancerous tumours, and cancer cells often develop protective mechanisms to avoid them being recognized by the body as a disease. That's why they boosted these T cells with a vaccine and GM-CSF. I will not receive more of Mike's T cells for the time being, but I will receive the vaccine and GM-CSF shots at 4 and 8 week intervals.

This protocol is part of the clinical trial I am enrolled in. Because I'm the first one in the trial, the Gateway Foundation, which is funding the trial, is flying me to Chicago this coming week to talk to their Board of Directors about my disease and my participation in the trial. That should be interesting.

This clinical trial is a Big Deal at MDAnderson. Mike came into Houston on Wednesday for preliminary blood work before they harvested his cells on Friday. I was there starting Tuesday for the whole battery of tests. On Thursday they harvested cells from me purely to do further research on. Then on Friday, after Mike's cells were collected I returned to the clinic in the evening and received his cells, the vaccine and the GM-CSF. During that process we met the researcher who made the vaccine. A young guy who was quite excited to be a part of this project. Dr. Larry Kwak is the principal investigator in charge of this trial. Dr. Kwak has spent 20 years working on developing cancer vaccines. He is world renowned and everyone at MDA speaks of him with great respect.

Of course, Mike became quite well known in the apheresis (the drawing and separating of blood components) unit. Not sure why. Was it because he constantly referred to himself as "number one guinea pig?" Was it his mooing out loud after he was given a bovine substance with one of his meds? Was it a nurse running from him so he couldn't get a picture of them together? He is quite a character. But selfish he's not. He's made numerous trips to Houston over the past year to have his stem cells collected, to have blood work, to have various tests, to get shots, to have his T cells collected, and he's had to give himself shots at home. Similarly Susan's brother has been a godsend: opening his house to us for 4 months, driving us all over town and to and from the airport, keeping his refrigerator and cupboards full of food, having dinners waiting for us after long days at the hospital, bringing me my daily almond croissant at the hospital, getting us movies to watch at home and just taking care of us through some tough times. Yeh, we're pretty fond of our brothers.

So I guess we'll just let Mike's super charged T cells get to work in my blood. Will report back once we have info on the progress.

Dan

Amped Up

2010-12-20T15:37:00.003-07:00

As Emeril would say, BAM! We're amping it up for the holidays. Velcade dose doubled, steroids quadrupled, and the treatment is now twice a week, as opposed to once a week. Rifkin and I made this decision today after first looking at my blood counts, all of which were "excellent" and considering that my IGGs and M protein were rising. Rifkin agreed with me that we want to try to decrease those myeloma numbers in advance of receiving my brother's white cells next month to give them the best chance of choking down this myeloma. I jokingly suggested that we first call my family to get their input as they're going to have to live with me during these next few weeks. I was on this dosage 4 years ago, but it was the first course of treatment following my first transplant. A whole lot of toxic waste has passed through these veins since then and I don't tolerate this stuff like I used to. But I was the one who initially suggested it, so I wasn't going to back down when Rifkin agreed. It should be an exciting Christmas at the Patterson household this year.
Joy and Peace to all,
Dan

Tired of Viral Infections

2010-12-19T21:37:00.003-07:00

A couple of years ago I met a man at the clinic who had had an allo transplant. He told me he was doing well, but tired of always battling some infection. I know what he means. This immunosuppression makes one vulnerable to all bugs. After recovering from the shingles, without any lasting side effects I immediately contracted RSV (respiratory synctial virus), a viral infection infants and young children often get.---oh yeh, and immuno suppressed people. I had this about four years ago and it took 2 weeks to get rid of. I'm about 10 days into this one. I've decided I need to curtail my encounters with larger groups of people. Not that I was a big socialite, but I have let down my guard and I think it's time to put the barriers back up.

The downside of these infections is that I can't stay on my maintenance regime. I've only had 2 weeks of velcade over the last 6 weeks. The result is that my IGGs have risen to 2800 and M protein is up to 2.0. These are not alarming numbers, but in the face of an allo transplant that is supposed to give me the chance to have the myeloma eradicated, we're moving in the wrong direction. Fortunately, I will be returning to MD Anderson soon for my DLI (Donor Leukocyte Infusion--an infusion of white cells) from my brother. I am scheduled to receive 3 infusions over the next couple of months. Mike has been to Houston so often in preparation for these infusions that I told him we should rent him an apartment there. He voices no complaints. I can't say he's a saint, but he's one hell of a brother.

We've got our tree up, Catherine will be here in a few days and we're planning a quiet family Christmas. We wish you all a Merry Christmas, Happy Holiday, or whatever you choose to celebrate.
Dan

The Roids Are Back

2010-11-30T00:17:00.004-07:00

I got juiced with steroids today and it seems I'll be up much of the night. Counts are good. White count at 4.2, which is really good for me (3.0 is normal). Hematocrit is at 34, which is also very good for me (normal being 40+). I'm going to a shot of velcade and steroids every week until we head out for MD Anderson for my infusion of additional white cells from Mike. This weekly regime is at my request (god Rifkin must be tired of dealing with this type A personality). I asked why we were on an every other week regime when I still had residual myeloma in me. He immediately capitulated to a once a week regime. When I was taking depositions I never had such success with my interrogations!

Everyone is doing well. Nothing new to report. The shingles have calmed down although I still have the nerve pain in the rear end. Oh, the indignity of it all. These past months have been good in that they have allowed me time to discover that I, in fact, can live with the many limitations this cancer and its treatment have bestowed on me. While I know I have been dealing with them constantly for the past five years, it's mostly felt like I've been moving from one crisis to another. These last months are a relief in that I am not in nor anticipating any impending major assault. Learning to live with the many issues I'm left with (mainly as side effects from the chemo, like loss of smell, taste, neuropathies, daily indigestion, fatigue, etc.) it is always a challenge, but as Susan regularly reminds me, "you're alive." And to that I say, "you're right." And that's that. I'm alive, I'm trying to stay active, I always so grateful for everyone's support. The gratitude for my brother Mike's unselfish act of being my donor only deepens with time. He's had to make multiple trips to Houston, administer shots at home, endure bone pain and for no personal reward. What a brother! With that kind of support how could I not be happy. A good frame of mind for the upcoming holidays.

I wish for you all the same peace and happiness I feel every day.
Dan

Shingles Belong On A Roof

2010-11-11T20:37:00.005-07:00

Ever since I was diagnosed I've taken medication (acyclovir) to prevent shingles. Shingles arises from the same virus that causes chicken pox and shares many of its same awful features, including the blistery itchy rash. You only get shingles if you've had chicken pox. The virus then goes dormant in your nerve roots. It can "wake up" in older and immune suppressed people and the virus shows itself as shingles. I've been on automatic refill for this drug at my Target pharmacy. Well, they didn't fill it last month and I didn't notice that I was out, given my 12 or so drugs I take daily. Three weeks of no protection and the opportunistic virus rears its head and bites me in the ass. Unfortunately I have the rash and the significant nerve pain in the most inconvenient of places--my left buttocks! Are you kidding me? I want to scream, "what next" but I'm afraid of what could be next. I'm constantly reminded of John Lennon screaming, "I've got blisters on my fingers," on the Abbey Road albumn. My refrain: I've got blisters on my ass.

Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.

Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.

Dan

In The Eye of the Beholder

2010-10-28T14:58:00.001-06:00

Starting at the end of the story: I'm sitting in the waiting room at the clinic on Monday waiting for my velcade shot. Nurse Patty, whom I've known for most of my years of treatment comes in, chart in hand, announcing, "Dan? Dan?" I waive my hand and stand up to accompany her into the treatment room. She whispers to me, "oh, I was hoping it wasn't you." I look at her quizically. "What are you talking about? Is something wrong?" I had already received my blood counts for the day and met with the doctor. I was told everything was fine. She says, "you're getting velcade. I'm so sorry." I again respond, "I don't understand. What's wrong." She says, "I thought you were done with treatment." "Oh, you thought I was in remission and have now come out of it?" "Exactly," she says, "you looked so good, and still do. You don't look like you've come out of remission." I told her that I haven't had a day of remission in 5 1/2 years and was quite excited about starting velcade as it might help reduce my residual myeloma before my donor leukocyte infusion (DLI). So, she feels bad and I feel good about my getting treatment. And that's the way it goes.

Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.

Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.

Happy Halloween to all.
Dan

Big Fella Unleashed

2010-10-12T20:01:00.003-06:00

Those of you who grew up with the Big Fella, Mr. Pete and Fuzz will understand the potential repercussions associated with releasing the Big Fella's cells in me. Although I was told that I could be on anti rejection meds for years, I'm off them after six months. The anti rejection meds are now on the shelf. We'll have to be even more vigilant for signs of GVHD (graph vs. host disease). Although I think the fact that I haven't had any makes it less likely, I'm told that's not the case. Doesn't make sense to me.

My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.

I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.

The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.

I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*

*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.

Dan a/k/a The Fuzz (circa 1970 when I had hair)

The Incredible Shrinking Man

2010-10-07T17:57:00.002-06:00

I forgot to mention, in the last post, the varied, but discouraging, results of my height measurements. I had 2 measurements taken by 2 different nurses within 20 minutes of one another. First it's important to know that each of them could not have been taller than 5 feet, with heels, so how they could see where to place the measuring bar is beyone me. Nonetheless, the first measurement had me at 5'7"; the second at 5'7 1/2". YIKES. Either one is shrinkage. In March 2005 I was 5'11 3/4". In July, after my spine collapsed, I was 5'8". I'm continuing to shrink--but only in stature. In this way, I guess I have many more people to look up to.

Time in Texas

2010-10-05T21:35:00.003-06:00

Much to say and most of it good. I've spent the better part of the last 2 weeks in Texas. First, at MDA and then a return trip to Tyler for my nephew, Kyle's, wedding. (Kyle is Mike's boy). The wedding was a great celebration. Kyle has married a beautiful young lady, Gennie. All of Mike's siblings (Tom, Kathy and me) made it to the wedding along with our mother. We (Susan, Catherine, Julia and I) spent many vacations with Kyle and his brothers, skiing, canoeing, going to the beach. I enjoyed seeing all these guys now that they've become young men. While some would say it makes you feel old, it made me smile the entire weekend. I so appreciated that I was able to participate in this life event for Kyle and his family. The last five years have made me very grateful to be able to spend time with my family. Tom has a few pictures from the wedding posted on his blog: www.bigfrankdickinson.blogspot.com.

The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.

We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.

While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.

Our best to everyone.
Love,
Dan

MDA

2010-09-20T22:04:00.002-06:00

On the way to MDA on Tuesday for 3 days of testing and a meeting with my doc. This is my 6 month checkup (6 mos. from transplant) and since I have had no significant issues since being discharged in mid June I'm not expecting any surprises. Mike was there last week signing the paperwork to commence the vaccine trial. Once I sign the last documents they'll begin making the vaccine (which will take about 3 months). Then a 2 month period for Mike to receive the vaccine and then I get more of his cells. I'll give more detail once I return next week.

Dan

MDA, mountains, and a birthday surprise

2010-09-06T20:31:00.003-06:00

First the numbers report: IGGs 1909, M protein 1.5. These are essentially the same as they were in late March and June. Stable is the word. White count has come up to 2.8, which is better than it has been in some time. Not sure why, but we'll keep our fingers crossed.

My first return visit to MDA will occur in about 2 weeks. This is my 6 month checkup and will involve 3 or 4 days of testing and a visit with my doctor. They will also review the protocol for the vaccine clinical trial I will be participating in. It will take about 2 to 3 months to make the vaccine. The production will begin once MDA reviews the protocol with me one more time. Then Mike will start his visits to MDA to begin the process of vaccine injections. That will take 2 months. I will join him for the last visit as they will harvest his cells and immediately give them to me. Then I have about a year of visits as they monitor my response. If it is not what they expect they can give me a couple of more injections of Mike's cells. This all has its risks as outlined in the 10 page informed consent. But I don't have any other options, so we go forward.

In the meantime I am trying to have a life. I'm able to ride up to 12 miles on my bike. I wouldn't win any races, but the exercise is no doubt good for me. This is complemented with twice a week physical therapy sessions. I am too embarrassed to admit to the low amount of weight I am working with, buy my therapist assures me I will improve.

My brother Tom and I took a short vacation last week. Now a guy like me who does mostly nothing doesn't need a vacation. But Tom did. So we headed up to a cabin on a mountain lake in the Colorado mountains. The setting was gorgeous. My activity wasn't any greater there, although I did some hiking (walking?). I got enough of a taste that I'm hoping to be able to climb a fourteener next summer (a 14,000 foot high mountain for you non Coloradoans). I will have to see some improvement in my neuropathies, leg strength, and lung capacity, but one must set goals. It'll give me something to work on over the winter. (I had begun "bagging" fourteeners a few years before I was diagnosed and managed to reach the top of 8 peaks. Only 44 left to go!)

And finally, the birthday surprise. Last Friday was my 58th birthday. Julia requested that we stop over at her apartment before we went out for dinner, as she wanted me to open my present before we went to dinner. As we entered her apartment, I saw a large box, wrapped in birthday wrapping paper. I pulled the paper away, lifted the top and saw an old blanket. As I pulled the blanket up, out jumped......Catherine, yelling "Happy Birthday." I can honestly say it is the best surprise of my life. We had a great dinner with the girls and Tom, followed by a relaxing weekend.

We continue to be very grateful for all who have carried us these past years. I feel like I am reaping the benefits this year as I feel better than I have in 2 years.

Dan

You Can't Make This Stuff Up--Amended

2010-08-18T12:41:00.003-06:00

I've been calling my health insurer trying to get some explanation regarding a claim for reimbursement for mileage and some costs for my donor. The claim office says "call the transplant center". The transplant center says, "we don't handle claims, call the claims center." Today I finally get someone who will talk to me. After much cross examination by me I learn that in fact my claim has been processed and a check has been issued. Fine, so I ask, "to whom was the check made payable and where was it sent." The answer: "the check was made payable to 'Transportation Meals and Lodging' and it was sent to [the insurer's] PO Box in California." Naturally I asked if she had a phone number for this 'Transportation Meals and Lodging' fellow as he had my check and I wanted it back. No such luck. But she has initiated an "investigation" to determine just what happened with my claim and check.

I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.

The nose knows

2010-08-16T19:57:00.006-06:00

My counts remain stable. Although still low, my white count has been stable enough these past 2 weeks (2.7 today) that I've avoided the neupogyn shots. Red counts and platelets are also stable. My very low dose revlimid maintenance regime (.5 mg every other day) seems to be working and allowing my counts to recover. They'll check the myeloma levels next week (results in 2 weeks). Health insurance has approved my donor lymphocyte infusion at MD Anderson so Mike and I will be returning to Houston soon for a week or so of workup and yet another infusion of Mike's cells.

Having lost my hearing and my sense of taste, I've now begun to suspect my sense of smell is also impaired. It has taken some time for me to realize this but, I haven't been able to smell the wonderful meals Susan is constantly preparing. And yes, Rifkin confirmed today that all the chemicals I've received can obliterate one's sense of smell. He asssures me, it "usually" returns. He's said the same thing about my neuropathies and rather than improving they are getting worse. We are experimenting with more neurontin but have not yet found the right dosage to relieve the pain. Fortunately I can ride my bike because I find I don't like to walk as my feet start throbbing and tingling after 10 minutes. As for the loss of smell and taste, I find that I am driven to tastes on the edges, like spicey and sweet. Now I know why I told Susan the other day that I was tired of chicken--too bland. So tonight we had hamburgers with jalapenas in them. Yes! Of course this diet complicates my digestive issues.

While I make fun of the loss of smell, it is a serious issue. It presents life challenges, such as not being aware of dangers such as gas leaks, fire, or spoiled food. Having now researched the risks I just realized that I've had this problem for awhile and it seems to be getting worse. Over the past 2 years I eaten some bad meat, which made me quite sick. Julia and Susan chewed me out after each incident for being so stupid. In fact, they have been quite diligent in throwing out any cold cuts that might be old before I can get my hands of them. My awareness is now heightened but I do hope this follows the "usual" course as Rifkin suggested and goes away soon. Not being able to fully appreciate Susan's cooking would be quite a loss.

That being said, I continue to feel and believe that we have turned a corner here. These issues are minor given the minefields we've been through. I can live with this stuff.

To life,
Dan

That Brain Thing

2010-08-04T16:28:00.003-06:00

Mention you're having a brain scan and you get people's attention. I'm not sure if it's out of concern or interest if they'll find anything in this skull. Well, the answer is they have located my brain and it's where it's supposed to be. Second, there is nothing in the scan that would explain my dizziness, vertigo, or loss of hearing. Third, and perhaps most surprisingly, my brain is "normal." How many of you readers have scientific proof your brain is normal? Yeh, I thought so---not many!

I naturally have my own theories as to those ailments: The dizziness and vertigo are due to my drugs, primarily the antifungal drug, which I've had trouble with in the past. The loss of hearing is likely due to the extensive chemo I've had. My doctor even asked what I thought was causing the dizziness and vertigo and of course I told him. I don't know whether he's adopted that diagnosis. As Susan said a few years ago after an exam where I charted my future treatment and my doctor agreed, "the inmates are running the asylum."

But the hearing is improving. The loss has moved from profound on the left and severe on the right to between moderate and severe in both ears. A bit more improvement and I'll probably be able to get along without hearing aids. They were quite surprised by the significant improvement in the left ear, particularly.

White count continues to languish. I now need a neupogyn shot every Monday as I am neutropenic every week when I have my blood checked. Neutropenia is the condition of abnormally low neutrofils, which are the circulating white blood cells that serve as the primary defense against infections by destroying bacteria in the blood. Because mine are so low I have to limit my exposure to crowds, children, pets and other potential sources of bacteria/virus, fungus (like gardening, for example). W.C. Fields had much to say on this subject: "anyone who hates children and animals can't be all bad," and "children should neither be seen nor heard from-----ever again." But I digress. Staying out of the sun, out of the pool, out of the garden, away from crowds, not drinking wine, my god, I might as well be a monk!

But despite these issues and a few more (like these awful neuropathies) I continue to feel like we've turned a corner. My anti rejection meds have been further reduced and I'm back on revlimid, although just every other day since that will cause further reduction of my white count.

Best wishes to all.
Dan

If I Only Had a Brain

2010-07-26T18:59:00.003-06:00

I received an email today titled: "you blog". Not sure if that was a typo or an order. So, to stay on the good saide of J. Sadwith, here goes: First word on the medical front.

Cancer Numbers: M protein 1.5; Iggs 2000. THese are very good numbers for me. M protein varied between 1.7 and 1.9 at MDA. IGGs were aroun 1900. The dropping of the M protein is very encouraging.

My other numbers have been good, EXCEPT for the white count. I don't seem to be able to hold white cells--particularly the neutrofils, which are the really good white cells that fight infection. I am neutropenic (meaning I am prone to picking up bugs/infections). This is due in part to some of the meds I'm on, to the revlimid, and just part of the recovery from a transplant. I'm sure it's also due in part to the fried bone marrow I came home with from Little Rock. You may recall that all of my blood counts were in the toilet and they never fully recovered before my transplant this spring (white count in particular). I got 2 growth shots last week (neupogyn) but, although the white count jumped, it's back down today (2.2). So the plan is to get a weekly shot of neupogyn and to reduce the revlimid to every other day. I'm only on 5 mg of revlimid, which is quite a small dose.

I'm also having dizziness; sometimes fairly significant. Of course I have this hearing/ear problem which could contribute to the vertigo. And I am on a lot of meds which could also be a factor. Anyway, this has earned me a brain scan. Hence the title of this post. Rifkin wants to rule out an infection, which I think is highly unlikely, and also to get a picture of the sinuses and ear canals--which I can understand. I see the ENT (ear, nose throat specialist) tomorrow to retest my hearing and to discuss hearing aids.

But putting aside those issues, the fatigue and the neuropathies in my feet, I'm feeling pretty good. If I could elminate the clinic visits 2 to 3 times a week, and my daily 2 hour naps I might actually be able to put in a full day of doing nothing. Just kidding. I'm mostly feeling that I'm really tired of this 5 year ordeal. I'm feeling worn out. I tried to persuade Rifkin to let me go swimming (since I love to swim), even lining up the pool at a friend of mine's law firm (thanks Jeff, it usually pays to know people in high places). But no go. No swimming anywhere. My bike riding is also limited because I cannot be exposed to sun, even for the shortest time. I have to put sunblock on every morning, even when I'm not planning on being out for long, just in case. (Sun exposure/burn can provoke graft host disease).

Anyway, I just want my life back. Although I have weathered some rough times these past years I have managed not to have much depression. But now, it seems to be creeping in--perhaps, because I'm not feeling like I have to hold it all together in the midst of a crisis--which is how the last 5 years have felt (this is the analysis of another friend, but it makes sense to me). I've never allowed myself to go to this place. I was talking with Rifkin's nurse practitioner today, whom we really love, and she reminded me this is a chronic disease and that's how it's going to be. As she said, "you're going to have a new normal." To which I replied, "that is NOT normal". (incidentally she is moving to Houston to work at MDA. we'll miss her, but will still be able to see her when we're down there). So much for my bitching. I'm sure I'll get over it. If I only could go swimming.

Now on to the social stuff. I made two promises when I left Houston--that I would go back to Dickinson, ND to see my mother and to attend my 40th high school reunion. And to go to NYC to watch Catherine finish the triathalon. I can now confess that I had a good amount of concern about these trips--going through airports, traveling on planes, and being tired. But they were uneventful from the standpoint of being exposed to bugs. The trip to ND was good as it preempted any traveling by my mother, which she finds more taxing as she gets older. Dickinson is a small town and things are a bit slow there, which was fine with me and gave me time to nap every afternoon. A high school classmate and I made a vow at our 30 year reunion that we would see each other at our 40th. At the time it was an easy bet for me and a push for him, as he was wrestling with colorectal cancer. He's had many tough times over the past 10 years, and you know my story. But we made it. As I walked into the opening reception there he was, standing at the door waiting for me. Big hugs, high fives and "we did it," and we went on to celebrate. Don't worry--no alcohol for this guy. My liver is working overtime just getting rid of my medications.

And then there was the triathalon. She did it! Susan and I were at the finish line in Central Park as Catherine ran across. 4,000 swimmers/bikers/runners. She did the entire race without stopping, swimming 1 mile in the Hudson, biking 25 miles and running 6 miles. She looks great. We visited her office at Yahoo! and met many of her friends who were running the triathalon. What a young enthusiastic group. This was a fund raiser for the Leukemia and Lymphoma Society. Yahoo! raised $200,000! Because of their great fundraising the LLS is naming a grant for Yahoo! The firm got to decide which blood cancer the money could go towards and they chose myeloma because of Catherine's moving story of what we've been dealing with these past years. Susan and I got to tell them how much we appreciated their compassion and how much it will mean to research and patient services for people with myeloma. We also got to see Susan's cousin Arlene, her husband Jim, their kids, and their grandkids. It was great but I was exhausted. I came back to Denver after 4 days. Susan stayed an extra week. We had a great time with Catherine and I can't wait to get back there when I have more energy.

Despite my grouching I feel very good about where things stand after this transplant.. We still have some treatment left (the vaccine trial). And as my anti rejection drugs are reduced Mike's cells will hopefully begin a frontal assault on the remaining myeloma. It feels like we may have turned a corner. Maybe that's why I'm feeling low---I want to get back into life but I'm not ready to accept my "new normal." But as Susan always says, "at least you're alive."

So that's the news from last month. I'm glad to be home, in Denver where the weather is mild and I can relax. How's that John? Best to all.
Dan

Say What??

2010-06-27T10:49:00.003-06:00

Still reeling from our four month sojourn to Houston, but so very glad to be home. Susan has unpacked everything but my stuff and my items remain strewn about the bedroom. I still have trouble completing projects. I will be seeing Rifkin and having lab work done weekly. So far everything remains stable. I'm ready to have my medications reduced as I feel weighted down from the heavy anti biotics, anti fungals, anti virals, anti rejections, and all the drugs I take to offset the side effects of those drugs.

The latest glitch arises out of my ear drum that ruptured just before we left Houston. Apparently the head cold I've had for the last 6 weeks put too much pressure on the sinuses and blew a hole in my left ear drum. The pain passed but the blood draining from the ear alerted us to a problem bigger than an ear ache. Although I had it checked at MD Anderson, I didn't know the ear drum had burst until we got to Denver, but I'm sure glad I decided not to fly. Anyway, the ear drum is healing, but the hearing loss is significant (or as the ENT doc said, "profound"). My right ear also has "severe" hearing loss. The culprit is likely some of the high dose chemo drugs I've taken, most likely cysplatin. The anti viral, Vfend, also wreaks havoc with my ears and I specifically asked not to be put on it--request denied. I guess one shouldn't be surprised that all these poisons I've injested over the past 5 years would extract a toll on my body. Until I get fitted for my hearing aids, I feel like a character from my childhood, "blowin Joe Ziegler." Yes, "blowin Joe" worked at the local hardware store and walked around constantly blowing from his mouth, to clear his ears. As little kids we thought he was an hysterical character. Now I am him. What goes around comes around.

Going back to Dickinson to see my mother this coming weekend and to attend my 40 year high school reunion. Always nice to see my mom, and I'm excited about seeing many of my friends who visited Denver in 2006 for the famous "Fuzz Fest", as well as a whole host of others who have kept in touch. Hoping my ears can handle the flight and my fatigue doesn't keep me from too many social events. As my brother Tom always counsels me, "take it slow." Susan also deserves a break from me. Talk about testing a relationship these past 5 years!

So, we are gradually reentering life. It's a difficult process, having been out of town for intense treatment for 8 out of the last 18 months. But this time it feels like we are entering a good phase and for that we are very grateful. As a result these posts may become less frequent. I, for one, am tired of the constant (often daily) monitoring of my health. I can't imagine your feelings, other than probably relief, "enough already!"

Love to all,
Dan

Home

2010-06-20T15:46:00.002-06:00

Finally. We arrived in Denver last night after 2 long days of driving, primarily by Susan. Friday we concluded that my ears were unlikely to clear for awhile and I decided to bite the bullet and suffer the ride and off we went. Many stories, such as driving 40 miles through west Texas in 100 degree heat, hoping to come upon a town with a gas station. Talk about cutting it close. But we're home, a bit stunned from the long absence but grateful for a relatively trouble free transplant (if there can be such a thing) and appreciative of the wonderful Colorado weather. It's a cool 70 degrees today, slight breeze and no noticeable humidity. More later but for now, we're back.
Dan

Temporarily Grounded

2010-06-16T15:14:00.005-06:00

Last week my doc said I could likely go home this week and in fact said to go ahead and book a flight on Wednesday (yes, today). I was cautiously optimisitic but not so much so that I posted it. In one week's time I've come down with more of the crud. The visit yesterday was supposed to be the sendoff, but instead it was an examination of all those congested orifices. A little blood oozing from the ear had Susan and me concerned, but it seems its just a broken bloood blister. In my ear? So some heavy duty antibiotics, and antibiotic eye drops for the infection there and the belief is that I'll be ready to go by Saturday. My left ear is completely plugged and I can't hear a thing. I'm not getting on an airplane until that clears as I suspect the pressure changes would put me on the floor in excruciating pain. Everything else seems a go. My blood work remains stable. I had my central line catheter removed from my chest. For the first time in 3 1/2 months I will be able to stand facing the shower. But oh, how clean my back is!!!

I start revlimid tomorrow and they will be enrolling me in the vaccine trial sometime next month. Much to my surprise I learned last week that Dr. Larry Kwak, who is the chairman of the Department of Lymphoma and Myeloma at M.D. Anderson will be overseeing this trial. Dr. Kwak was recently featured in Time Magazine's list of the 100 most influential people in the world due to his career devoted to research on cancer vaccines, including a very successful trial on a vaccine for non Hodgkin's Lymphoma.

The protocol for the trial I will be involved in was written by Dr. Giralt in 2004 and only finally approved this year. This clinical trial is modeled after Dr. Kwak's. As I've said previouly, I believe I will be the first myeloma patient to receive this vaccine. Cutting Edge Science!

So, here's to clearing the ears and descending upon Denver.
We continue to be very grateful for all those who have sustained us over these many month away from home. Most particularly Susan's brother Gary who opened his home to us and let us take over. He made a challenging situation seem so easy and natural. As Susan said the other day, "well at least we know we can all live together." What's she planning? A family commune?

Dan

Final Exams

2010-06-12T10:03:00.004-06:00

At some point they will discharge me. Of that I'm sure. In preparation they are putting me through the steps I went through just prior to my admission to the hospital for the transplant. Blood work, blood work and more blood work. An opthamologists exam where no fewer than 4 people peered into my eyes. I can only wonder what deep dark secrets they saw. The exam was intended to look for a couple of problems: changes in vision and graft vs. host disease (gvhd). Neither was present. Similarly my pulmonary function was normal and there is no evidence of gvhd in the lungs. This surprised me given that the chemo regime I received in Little Rock (Super Beam plus) is very hard on the lungs as is all chemo. I figured this 3rd transplant would do my lungs in. Not so. Everyone is quite pleased that I haven't had gvhd as it can be quite nasty. Essentially its Mike's cells attacking any or all of my cells or organs. His cells would see my cells or organs as foreign and go after them. I'm not out of the woods yet as it can hit anytime in about 3 years from transplant. But most often it occurs in the first 100 days, which is why they want to keep me here for that 100 day period.

And then there are the 17 pounds I've lost. Nothing compared to the 50 I lost in Arkansas, but more than I expected. Thankfully Dr. Rifkin beefed me up with steroids before this transplant so I had the weight to lose.

Susan and I had to attend a discharge class to teach us what to do and not to do once I get home. Although we've been through this twice before we have to exercise more caution because this was an allo transplant and I am on immunosuppresants. Much as I want to jump back into the full flow of life I guess I have to proceed slowly.

We see the doctor on Tuesday and should have a better sense of when I can return to Denver.

Love to all,

Dan

And On the Third Day He Collapsed

2010-06-06T15:10:00.003-06:00

Yes, it seems that reservoir has about a 2 day supply of energy, at best. The game last night was fantastic. A bird's eye view of all the Cubs, even Lou Pinella's scowling face. But the back to back days of partial activity left me exhausted today and my neuropathies throbbing. A day of rest should take care of those issues. It's apparently going to be a long road back. Today this 57 year old is feeling his age, hundreds of doses of chemo, and three transplants. Tomorrow's another day. Onward and upward.

Reality Check

2010-06-05T13:51:00.002-06:00

With all that new found energy I ventured out yesterday. We headed to the Galleria, Houston's upscale shopping center (also known as a mall). I brought Susan along to help craft my new style. You see, I haven't bought any new clothes in about 5 years, since all this nonsense started. Something to do with the fact that my weight has fluctuated 65 pounds, depending upon my intake of steroids and a variety of other factors (like a month in the hospital or other weight losing efforts). Although I must admit that Susan and Julia did buy me a couple of "hospital shirts" at Walmart in Little Rock. Anyway, off we went to find bargains in keeping with the new Dan. That would be the guy with the shiney dome, a struggling goatee, a shorter stature, and numb feet. Well, we've started the transformation and it doesn't include low riding jeans with plaid boxers showing through. It also doesn't include new shoes, as the numb feet make trying on footwear an unpleasant experience. You'll just have to wait to see. The point of this is that after 3.5 hours of shopping my energy disappeared faster than a perfect game in the hands of umpire Jim Joyce. I could hardly make it to the exit to get in the car and come home. Whoa!

But never one to be deterred, today is a new day to test that energy level. Only today (or tonight) Gary and I are headed to an Astros/Cubs baseball game. Prime seating thanks to Gary's connections will find us in the row immediately behind the Cubs dugout. This is all being done with doctor's permission. In fact, when I asked the doctor if I could go to the game, one of the nurses in the room started laughing and said she had been in my hospital room 2 months ago when I was continually pleading for permission to go to the Astros/Rockies game about 3 weeks ago. Permission was denied at that time. In her words, "you never give up." Now I don't know what difference 3 weeks can make but giving me permission only encourages me to continue in my pestering to go home early. Of course, the fact that I now have a different doctor wouldn't be a factor, would it? My attendance won't be without ridicule. Gary has already said we have to leave early to allow time for Chester to walk from the car to the ballpark. (for those who don't understand the reference to Chester, ask someone older than you who used to watch Gunsmoke).

Anyway, I feel that I have more energy but the reserve isn't very deep. Rest assured I'll keep at it.
Go Cubbies,
Dan

The Awakening

2010-06-03T20:45:00.002-06:00

I've been amazed after each transplant at how tired I am. As my earlier posts noted this year I was sleeping 18 hours a day when first discharged from the hospital. It seems that the fatigue is cumulative, i.e., each transplant seems to bring along 30% or more of the fatigue from the prior transplant. So I operate in this fog for weeks/months and don't even realize it. Then boom, I wake up. This week I felt a bit of the awakening. On Tuesday I woke up at 7 a.m. Unheard of for me. And more surprising, I didn't need a nap until late afternoon. Although I slipped one day and slept the better part of the day, generally I've had more energy this week, which is very encouraging.

I used this extra energy to continue to work my "team" for an early release. So far no success, but the nurse practitioner in charge of my care showed some signs of bending today. I'll keep on the pressure.

That being said, I am very grateful for the care I have received. They are very careful here in terms of avoiding unnecessary exposure to infectious environments, adjusting meds, pushing me in physical therapy, etc.

I'll start a maintenance dose of revlimid (5 mg) in the next few days for which I'm very happy. Although Mike's cells have fully engrafted I still have myeloma protein in my blood. I don't fully understand how I can continue to have myeloma when I have someone else's stem cells. But the revlimid should help reduce the M protein and guard against progression of the myeloma. A new clinical trial is showing the effectiveness of revlimid maintenance therapy following transplant. I don't qualify for this trial (I think because I was on revlimid prior to transplant), but that only means I don't get the drug without cost. My insurance will pick up the bulk of the $3800 monthly cost (my copay is around $60 I believe).

I think after this is all over I'm going to start a pharmaceutical company. In addition to the $3800 cost of the revlimid, I have an antibiotic to help prevent pneumonia that costs $3000 and an antifungal that is of similar cost. Those are monthly costs. Fortunately I only have to pay the copay. But that's only 3 drugs and I take about 12 pills a day. Monthly prescription costs probably run around $15,000 a month. Any venture capitalists out there interested in investing in Patterson Pharmaceuticals?

My blood counts and blood chemistry continue to be solid. I need less and less fluids and may soon be discharged from my twice weekly clinic visits, but still confined to Houston. Each milestone is another step towards Denver. Soon enough.
Until then, thank you again to everyone for your love and support.
Dan

100% Mike

2010-05-28T12:24:00.002-06:00

About 30 days ago they tested my blood to see what percent were Mike's cells and what percent were mine. I learned this week that Mike's cells have taken over. Of the cells tested 100% are Mike's. They have run the test again this week and we'll know the results in a few days, but don't expect much of a change, if any. I have no idea how they know one person's blood cell from another's, but they do. This is the goal--to have complete engraftment of Mike's cells. So it looks like we've accomplished that. For the sake of my own reputation I would have preferred to see my cells hold out a little longer instead of just rolling over for the Big Fella, but so be it. This transmogrification also explains some recent quirks in my behavior, to wit, being much more obnoxious, constantly straightening up the house, eating only a vegan diet, a feeling of superiority over other human beings, and an insatiable craving for a drink. No coincidence that these are traits of the Big Fella.

Plans are underway for my return to Denver, although it's still 3 to 4 weeks away. Susan and I have an appointment for a discharge class where we're going to learn everything necessary to keep me healthy once I leave the care of MDA. Having gone through 2 transplants, I suspect we know most of it, but they won't let me leave until we attend the class. I'm also wrapping up my physical therapy, continuing to stun them with my peak performances. And I have to have a complete pulminary workup but that has been delayed due to my cough and para influenza. We had hoped to get away for the long weekend, by going to San Antonio or Austin or to visit Mike, but they scuttled any travel plans---you must stay in the Houston area. Hmph.

That's about it. Not much new. Have a pleasant and fun filled Memorial Day weekend.
Dan

Hotter Than H ouston

2010-05-19T15:33:00.004-06:00

I can't believe I haven't posted for almost 2 weeks. How time flies when you're doing nothing. Then again....So here's the latest. First the weather: Houston is hot and humid (90 degrees, 94% humidity) and it's only going to get worse. The heat sucks the energy right out of me so I've just about taken to staying inside. I'll get my walks in by going to a Super Target or Costco or someplace like that---with air conditioning. I also go to physical therapy twice a week. Those "workouts" are an embarassment to anyone who considered himself an athlete at anytime during his life----like me. But they are about all I can handle right now. According to their data I'm doing very well. Of course you must remember that their data is compiled from people with wheel chairs, missing limbs, paralysis, and octagenarians. But I'm at the top of my class!

I've come down with the crud once again. Seems to be at least a twice a year occurence. The official diagnosis is para influenza, described as a cousin to the flu. I don't have a fever or other symptoms. The doc doesn't seem concerned and says we'll just have to let it run its course. My M protein (a key indicator of degree of myeloma) remains at 1.75; same as where it was in early March. Blood counts are generally good, although I received a transfusion yesterday as my hemoglobin is down a bit. That was my first transfusion since I was discharged from the hospital, which is great. By comparison, I believe I had about 20 transfusions at this date while in Little Rock and then another 5 or 6 in Denver. They will be reducing my anti rejection meds soon, as well as starting me on revlimid I believe.

This weekend I won't have to take any additional fluids. They tried this a couple of weekends ago but my creatinine spiked up (a measure of kidney function), so they put me back on daily fluids. Creatinine has started to go down so we'll try this again.

Susan returned from a long weekend to NYC. It was her first visit to see Catherine in the Big Apple. Of course they had a great time, walking through Times Square, around Central Park and throughout the city. We were both struck by the cycle of life, as Catherine is having the time of her life living in NYC, as Susan was when I first met her. Susan derives great joy seeing her daughter living that life. It was a busy weekend for Susan as she also worked in visits with her cousin Arlene, daughter Stacey and Sigun/Joe and her good friend Hildi. Julia drew the short straw and had to come down to Houston to "cover" during my caregiver's absence. Julia, Gary and I made the best of it by sampling some of Houston's restaurants and discovering the best ever frozen yogurt shop--Red Mango.

That's all for now.

Much love to all,

Dan

Getting Rid of the Roach

2010-05-08T09:57:00.002-06:00

I feel compelled to write another post just to get that creepy roach off the screen. Everything remains stable, so much so that they cancelled my clinic visit on Thursday. I'm still technically on a 2 day a week schedule to be at the clinic. I can't adequately express the relief in not having to go to the clinic every day. Those times and the hospitalizations make me feel as if my life is nothing more than getting treatment, 24/7. Now that my visits are less frequent I feel like I'm gradually returning to life. We've been out to lunch and dinner. I even went shopping with Suz yesterday. Of course I needed a nap after that outing!

We continue to be guarded about my recovery, having been burned by bad news more than once. That being said, this feels different. I am so relieved my counts are stable and that I haven't gotten really sick. I am very happy with MD Anderson and the way they run their clinic. I am also very pleased that my doctors have a longer term plan to keep attacking this disease. They've discussed with me two new clinical trials as possibilities to further reduce the myeloma. I feel better than I have in a year and a half (must be due to those weeks when I was sleeping 16 hours a day). I continue to lobby for early release but my doctor isn't giving in (not yet anyway). We're still looking at a return to Denver sometime in late June.

Happy Mother's Day to all you moms who are reading this, especially my mother, who prays for me daily and repeatedly assures me I'll be OK. Mothers know about those things so I'm sure she's right.
Love,
Dan

Our First Kill

2010-05-04T19:39:00.005-06:00

Houston's reputation for heat and humidity is well known. What is less well known is that there is a foreshadowing of this season. Just before the heat and humidity arrive, their appearance is announced by ROACHES. Egad! We have nothing like this in Colorado. Not only do they come in Super Size, but they Fly. YIKES. This morning Susan woke me up and asked that I take care of a roach in the other room. Yes, my first kill. Smashed beneath the heal of my shoe and later flushed down the toilet. But before it disappeared I did what Julia has taught me to do: document the roach. See above.

On a more positive note, the doctor told me today that my visits to the clinic will now be reduced to twice a week and there will no longer be fluids infused at home. Freedom is being dispensed in small increments, but nonetheless it's coming. My blood counts continue to be stable. I need an occasional neupogyn shot, but other than that I am producing cells almost like a normal person. And I feel pretty good these days. My sleeping is down to a mere 12 hours a day and the GI issues are slowly resolving. There are plans for further treatment, such as another infusion of Mike's cells, but for now, things look good. We still have a few hurdles to get over but everyone seems pleased with the progress thus far.

As always, thank you for keeping us going.

Love,

Dan

Optimism vs. Skepticism

2010-04-28T09:34:00.005-06:00

We met my new doctor yesterday. Yes, new doctor. Dr. G. has gone east to NYC to head up the transplant program at Sloan Kettering. His departure is lightheartedly called a betrayal by the staff at MDA because Sloan and MDA are always competing for the honor of being the nation's top cancer center. Dr. G. called me in December, before we had committed to MDA to tell me of his decision and to offer alternatives. As you know, we decided to stick with MDA, first because Dr. G would still be here for my transplant and a month afterwards and second because of MDA's reputation for running such a smooth and clean operation. A reputation which has proven to be true based upon our experience. Our new Dr., Dr. Q, from India I believe, is quite warm and knowledgeable. Dr. G has also indicated he will continue consulting on my case, even though he is now in NYC.

The bone marrow results are encouraging. My doctors are very encouraged and Susan and I are a bit more skeptical. My plasma cells were at 29% just before the transplant (down from 87% post Arkansas, due to the 3 months on revlimid). The lastest bone marrow shows them at less than 5% (actually 1 %). So why aren't we jumping up and down in celebration? First, remember that debacle in Arkansas when the plasma cells went from 90% to 5% in one week; only to return to 90% the next week. Although the bone marrow biopsy is often described as one of the most definitive tests, it has its shortcomings. One of those is that myeloma is patchy. It can be concentrated in one section of the marrow, and hardly present in another. So, my view is that they hit a section that has fewer plasma cells, which is not representative of my entire bone marrow. Why do I think this? Because my IGGs haven't moved downward, and because my M protein has also not moved--it remains at 1.7. We are assured that the effects of the chemo will continue for another 30 to 60 days and that can have a positive effect in decreasing the myeloma. The doctors, (Dr. G and Dr. Q) both see the entirety of my blood work as very encouraging. When I was questioning Dr. Q, he immediately asked how my blood counts were in Arkansas, when my bone marrow results were so inconsistent. When I told him that my blood counts were in the toilet, i.e., I continually needed neupogyn, red blood transfusions, and platelets, he noted that I have not needed any of that here, (other than a couple of neupogyn shots) meaning that my marrow is working much better. Regardless, things have definitely stabilized. And they still plan to start me on a regime of revlimid and another infusion of Mike's cells, both of which will help further decrease if not eliminate the myeloma.

An insight into the road we have walked: in mid June when my counts were not recovering, I was still losing weight, I was struggling with a body rash and thrush, my IGGs were rising, and Rifkin was telling me that he could not treat me yet because my counts were too low, I told him that I thought I had really screwed up in going to Arkansas and that I had gotten myself in such a bind that I would never recover. Rather than reassure me, he only said he understood why I felt that way. He essentially acknowledged I was in trouble, and I think that is one of the reasons he ultimately referred me to MDA. In light of that history, stable disease is great and decreasing myeloma is fantastic. We'll take this.

I still wrestle with fatigue, although less so, as well as nausea and diarrhea. Of what fun! But all in all I'm doing well, or in the eyes of my MDA team, I'm doing very well. They are better judges since they see all those who have much more trouble following transplant.

Thank you again for all the support, cards, letters, emails, thoughts, prayers, etc. We continue to be extremely grateful for all the support from family and friends. We love you.
Dan

Satisfied With Stability?

2010-04-20T22:11:00.008-06:00

The news yesterday should be measured against expectations. Depending on what we/you hoped for or expected, it could be good or not so good, but definitely not bad. Thirty days after transplant, the IGGs haven't moved. They're in the low 1900s, and were at 1875 in early March when this latest treatment started. (normal being between 600 and 1600) I had a bone marrow biopsy today and we'll have a bit more information next week. So what does this mean? Any reduction in IGGs would be caused, at this juncture, primarily by the high dose chemo I received prior to transplant. That didn't happen. The main chemo drug was melphalan. That was the main drug in my first transplant and also a key drug in my second transplant. We know how well that worked in those transplants. NOT. I repeatedly told Dr. B in Arkansas that melphalan did not work with me and my concerns were dismissed because, I was told, melphalan would given along with 8 other drugs. Those 8 other drugs didn't do anything to my disease either, other than make it even angrier than it already was. And, of course, the combo package made me extremely sick.

I told Dr. G. that melphalan does not work with my disease. At least he acknowledged my concern but told me melphalan is in every myeloma protocol they use and that the allo transplant would also have my brother's cells to work with. How is it that I know what won't work with me but the docs don't, or refuse to believe I could know such stuff? Yes, I'm frustrated. That being said, it's probably fair to say there isn't a chemo drug that could be given in high dose that would work with me, since I received every possible drug in Arkansas and nothing worked. As Dr. Rifkin noted upon my return from Arkansas, we need to use a little more finesse with my treatment.

Dr. G's spin on my IGGs is that my disease has been stable for more than 2 months and that is nothing to dismiss. In that he is correct, as my experience in Arkansas was that after about 2 to 4 weeks of each of the 3 high dose chemo treatments I received the myeloma counts started rising again. Dr. B's flame throwing super beam plus couldn't even stabilize my disease! Also, we won't know the full effect of the pre transplant chemo until 90 days post transplant, so downward movement could still occur in the next couple of months. Stable disease is definitely better than raging disease.

All is not lost, however. Because I have Mike's cells, they stand at the ready to attack this myeloma. They haven't been highly active in that fight because the anti rejection drugs mask my cells. So the plan is to start weaning me off the anti rejection drugs in about 3 weeks, being careful not to let graph host disease set in. Once off the anti rejection drugs, I'll get another infusion of Mike's cells and start on a low dose of revlimid. I asked Dr. G if remission is still possible. After a long pause he said, "I'm going to say yes. Definitely." I'm not sure what to make of that. Not to put the pressure on, buy I'm still counting on you, Mike.

Susan's expectations were higher than mine. She looked at me and said, "I was hoping for a miracle." My response: "Don't ignore the miracle standing right here in front of you. It's been five years and I'm still here." The anxiety of all this has taken its toll as she came down today with a nasty bladder infection. When it rains it pours.

On a more positive note, my counts continue to be very good and stable. I'm also getting some energy back and haven't slept 18 hrs a day for at least the last 4 days. I'm probably down to 12 hrs. a day. We go into the clinic a little less frequently, which is nice, especially since we now get the weekends off.

Continuing the Boring Life

2010-04-17T18:45:00.004-06:00

Visits to the clinic have now been cut to Mondays, Wednesdays and Fridays. My counts remain stable and I haven't needed any shots or transfusions. I've even had a couple of "good" days this week, meaning I didn't sleep the entire day. Yesterday I'm sure I slept 18 hours or more. But today I've felt more energized, took two walks and only napped for 2 hours. This is progress.

We saw the doc on Thursday and he continues to be pleased with progress so far. He outlined the plan for the next 30 to 40 days and it involves primarily watching for graph host disease or any other complications. At some point they'll start reducing the anti rejection meds and see how well Mike and my cells get along. In the meantime, my activities remain limited, I'm primarily housebound, and am thankful for the days we don't have to truck down to the clinic. Of course, Susan has to play nurse on those days, hooking up my IVs at home, which always makes her nervous since a nurse in Little Rock told her if she didn't do a particular thing it could kill me. Talk about increasing the pressure. That's worse than taking the nursing boards.

We received a nice card from a friend in Denver this week addressed to Susan and Dan Patterson c/o Uncle Gary. How funny! Soon Uncle Gary will get his own postal code.

Best to everyone.
Dan

A Week at Home

2010-04-12T09:35:00.002-06:00

The past week has been "relatively" uneventful. I still have my 5 hour daily visit to the clinic to get blood drawn and fluids. So far, I've only needed one neupogyn shot, which took my white count from 2.5 to 26.0 in one day. Whoa. slow down Mike. But I feel great about not needing transfusions of either red cells or platelets. The stability of my blood counts makes Dr. Giralt even more confident that Mike's cells have engrafted, as he doesn't think my cells would perform this well--I agree. In fact, he is quite pleased with my progress so far. That being said, it hasn't been a cake walk. It seems I'm plagued with either vomiting or something similar. Par for the course. And I don't think I've ever slept so much in my life.

And Susan is cleaning up the place with a vengence. Last night she was out in her brother's garage, of all places, moving things, dragging things out. Her brother seems to be the beneficiary of her channeling of all her nervous energy. Of course, I think it's the least "we" can do for intruding on his living space for 4 months. But he and Suze are having a good time, as I sleep my life away. They also are eating some fine food, as Houston has many great restaurants. Unfortunately, my appetite is also asleep.

Houston is quite nice this time of year, at least from the inside of the house or clinic looking out. My doc says stay in the house for another couple of weeks to avoid the pollen. It does feel like house arrest.

So far, so good. Still anxious to get back home, but doing well under the circumstances.
Thanks to all the MM survivors who have jumped on the blog to send their good wishes. Julia called me the other night, "dad, who is Steve Ritter? How do you know him?" Well, I know him only by his blog. "Well, he certainly is a nice man," she responded. Yes, all of you who continue to support us are very nice, indeed. Thank you.
Love,
Dan

Paroled

2010-04-07T07:26:00.002-06:00

I was discharged on Monday afternoon following an uneventful Easter weekend. For the next 10 days we have daily clinic visits, which will take from 4 to 6 hours a day as they test my blood, infuse fluids and any other nutrients my blood may be missing such as potassium, platelets, red cells, etc. I am still so exhausted that I see this as an opportunity to sleep, as I did yesterday. I slept through most of the 4 hours, then came home and slept another 2 hours. I guess the work going on in my bone marrow is sapping my energy. At least there's something happening there. Thus far everything in the blood seems to be in good shape (way to go Mike!).

We are now on the alert for graph host disease, which can show itself in variety of ways, such as skin rashes, fevers, increased GI problems, etc. None of it sounds good so we are maintaining high vigil to catch anything early.

Susan and Gary spent the 3 1/2 weeks that I was in the hospital cleaning his house and yard so I would have a comfortable clean environment. It all looks so nice and spit polished. Unfortunately it appears I won't be able to enjoy sitting in the yard as my first attempt at that ended after 30 minutes when my hands got all red and itchy and I had to retreat inside. That was probably my sensitive skin's response to the pollen and heat. I guess I've moved from room arrest to house arrest; a gradual expansion of my area of influence.

My appetite is marginal, which is why I was not shy about bulking up in the months leading up to this. I've also lost all my hair once again. Except this time I went to the barber and got my dome polished. The top of my head literally shines now. Ah, I'm sure it will be a challenge to be such a hottie. NOT.

So the plan is to keep everything as boring as possible and to get early release back to Denver. It's going to get hot and humid here very soon and after 35 years in Colorado I don't tolerate heat and humidity very well.

Happy Spring to all.

Dan

Discharge Aborted

2010-04-02T11:18:00.002-06:00

Well, it seems Ireally messed this one up. Yesterday was not a good day. Blistering headache with vomiting. Ultimately they took me off the anti rejection meds, gave me some IV dilauded and things calmed down. But not before I had my whole team in a tizzy. I felt much better this morning, after getting close to a full night's sleep. They only woke me once during the night. But the doctor was not very keen about discharging me because if I got sick again I would have to return to the hospital, get admitted through the ER (sit for hours and wait for a bed with all the sick people around me, coughing and hacking) and there would be no guarantee they would have a bed, or that I would get a bed on the transplant floor. The doc said, if she were me, she would stay the weekend and get discharged on Monday. So it looks like an Easter celebration in my hospital room. I declined the invitation to decorate my IV pole and participate in the Easter parade. But maybe I'll take a video to share.

I'm not too upset with this delay. I've written about our experience in Arkansas when we had to get admitted through the ER on a weekend and it truly was a nightmare. They are short on staff and cancer patients don't get any special treatment through the ER (we are such a spoiled bunch!), even though we are immunosuppressed.

With the exception of yesterday I've continued to do well. My white count is up to 8.1. Hemoglobin is 9.2 and platelets are 80. It has been along time since my platelets were at that level. This is all good because the elevated white count will help fend off infections and will help draw up the hemoglobin and platelets. Way to go Mike. (since these are Mike's cells). I had my first transfusion with Mike's blood type (O+) a few days ago and no complications. Changing to his blood type should not be a problem since O+ is the universal donor anyway.

So, we're looking at a Monday discharge, provided I behave myself. Will keep you posted. And thank you everyone for all you support.
Love,
Dan

Engrafting and More

2010-03-31T08:40:00.003-06:00

I was awakened this morning by my male Russian nurse (so imagine this being said with a heavy Russian accent): "I am pleased to tell you, my friend, you are engrafting. Your white count is now 1.5." YES! My night nurse predicted a jump in the white count given the intense bone pain I've been having. My back, sternum, and hips are all throbbing from the production of cells, which is a good thing, but it sure doesn't feel so good. Anyway, Mike is in Houston for a mediation so he spent a few hours here at the hospital checking on me. We had a nice chat.

So, we have passed through the risks associated with the transplant, and the risk of nonengraftment. Two major risks without major complications. I think this bodes well for me getting out of here sooner rather than later. Perhaps in a week.

That's all for now folks. Keep the good thoughts coming our way.

Right after I posted this the doctor came in for the morning rounds. She told me that I should plan on going home (to Gary's) on Friday. Wahoo! I am in shock. That is a week early and Iam so ready to get out of here. What a great day.
Love to all,
Dan

Look Out, The Big Fella Is Coming Through

2010-03-30T07:27:00.002-06:00

The nurse woke me up this morning with, "looks like something is brewing in your bone marrow. Your white count is .3, up from .1" Not a huge step in terms of numbers (normal count is above 3.0, but for me normal/acceptable is above 2.0. But more importantly cells are growing/engrafting in my bone marrow. They are most likely Mike's cells since they obliterated mine with the chemo. It's been 11 days since my transplant so this is on the earlier side of the time line cells are expected to start producing.

Yesterday was my roughest day so far and that might be attributable to the work being done in my bone marrow. I was completely exhausted all day along with the other typical chemo side effects. As my white count goes up I should start feeling better.

It's a strange thought when I ponder what they are doing to me. Killing my cells, harvesting cells from Mike and infusing them into me. Perhaps the word is humbling. Then again amazing would also be an apt description.

Much love to all,
Dan

Whas Up? Not Much.

2010-03-28T20:38:00.003-06:00

I've been waiting to "report" something, but fortunately nothing is happening, which is a very good thing. Every day I am asked by at least 4 nurses and 2 doctors whether there is any change in my condition/symptoms, etc. Nothing to report. Susan calls me every morning with a question, "how are you?" My daily response: "I'm fine." (under the circumstances) We're waiting for Mike's cells to wake up, although they aren't really expected to show any activity for at least another 4 to 7 days. I'm not bursting with energy but I do manage to get at least a mile's walk in every day, and usually more. In about a week or so we hope to see some activity in the white cell count and then a few weeks later they'll do a DNA test to see if it's Mike's or my cells that are growing. We want Mike's cells to show up and start to take over. Tom and I were talking about how we could provoke Mike into action. We concluded that he is so competitive that the best way to bait him is to tell his cells they aren't strong enough to do this job. I can already see his face getting red as he reads this. The challenge should work.

Two incidents come to mind. First, when we were in high school Mike set the school record for situps (something in the neighborhood of 1000 to 1500). His butt was so sore he could hardly sit for a week. Second, he got in a fight with the school bully and got punched in the nose and had his nose broken. Mike looked in the mirror, saw his nose off to one side, walked over to the well built bully and said, "you broke it, you fix it. Push it back in place." And by god, he did and then he sat down and cried and cried, with Mike standing there looking at him. For those who don't know him, his self annointed nickname in high school was "muscles Mike." Later he changed it to "big fella". Interesting, tough, and stubborn fella. There are an equal number of stories about brother Tom, but I'll save them for another day. And as for my sister, Kathy, well she chose to pursue a quieter life, or perhaps I just don't know about her secret life.

Susan pushed me into attending an exercise class here, with the promise that she would go with me. So there we are, all sitting in a hallway with our IV poles at our sides. The instructor starts out with a game to get to know each other and I think I've taken a ride in the way back machine and am back in first grade. Halfway through the "tell us 2 truths and a dream" Susan leans over and confesses that she can't take this and has to leave. "Say what" I say. "You made me come to this and now you're leaving?" She sits down. Five minutes later she's up (we're still playing the game) and she tells me she is definitely leaving. My response: "but you'll miss the shuffleboard game." She left. I stayed, but I don't think I'm a better man for it.

Now, back to this 10x10 room. I'm ready to get out. I'm tired of the menu, but thankfully don't have much of an appetite. I'm longing for a good night's sleep without interruptions to draw blood and check my vitals. I'm tired of being tethered to an IV pole (a ball and chain come to mind). Showering with these tubes coming out of my chest into my IV is quite an experience. and as my mother used to say: I'm sick and tired of being sick and tired. But these complaints are minor and I know I can put up with this. Just venting. Susan is an angel. She takes such good care of me and daily I am grateful I have such a good partner who willingly gives up her life to travel to such beautiful vacation retreats as Little Rock and Houston (for the summer).

Thank you everyone for keeping us going. We love you.
Dan

Happy Birthday ???

2010-03-23T20:55:00.002-06:00

Tomorrow presents a number of birthday options. First, the unquestionable: Mike will be 60 years old. WOW. talk about old! Happy Birthday Mike. We're sure glad you've made it this far. Now for the dilemna: Do I share in this birthday? Am I also 60, or at least partially so? I don't feel 60. Or did I have my birthday on March 19th when I received Mike's stem cells? If so, would that be my first birthday? or my 60th? It makes my head spin. I think I'll claim all dates as birthdays and (stealing a phrase from the NCAA) call it March Madness. Whatever the date and whichever the number, I'm glad to have this dilemna. March 23rd is also the 5 year year "anniversay" of my MM diagnosis, and to continue the celebration, March 26th marks the date, 33 years ago, when Susan and I first met on a 2000 mile blind date.

My course continues on the expected path. White count is now 0. In 3 days I'll start neupogyn shots which will I will receive for 7 to 10 days, to help wake up Mike's cells. This next week is predicted to be the low point of this transplant. Each day I'm feeling more tired, etc. But I'm still getting more than a mile of walking. "They got me going in circles....round and round we go."

Thank you everyone for the cards, emails, letters, and good wishes. We are very appreciative of your love and support.
Birthday wishes to all,
Dan

Keeping It Boring

2010-03-21T10:46:00.004-06:00

The transplant took place, as expected, on Friday, March 19th. I told Mike that's going to be my new birthday. They pumped me full of all kinds of drugs--anti rejection, anti viral, anti fungal, anti social. No, not anti social. That might come from Mike's cells. Then again, he's a pretty socialable guy, so maybe not. I had some immediate response to the transplant in the form of severe nausea and GI issues, but they subsided within hours. Thus far things are pretty stable. My current complaint revolves around the piercing headaches I seem to be getting from one of the anti rejection meds. They give me darvon but it doesn't seem to be helping much. The offered me dilauded but I'm not interested in that high. I took that to help with the back pain in 2005 and lost about 3 months of memory!

So the days just slip by. The nurses are in my room every hour or so, hanging a new bag of drugs, checking my vitals, etc. Not much time to rest. They are letting me sleep more at night instead of checking my vitals every couple of hours. I'm continuing to walk every day and am now up to 2 miles a day. The route we take around the floor makes Susan dizzy. A metaphor for our life perhaps?

This all feels too familiar. Reflecting back on the past 5 years it feels like we've spent most of our time in medical facilities. Life has turned into a treatment regime to stay alive, as opposed to exploring our world and filling our lives with new experiences. Certainly not what we had in mind for our retirement years. I wonder what it will feel like when I get into remission and life opens up again. Could we really bracket these past five years and move back into our old lives? I'm sure not. Too many lessons learned. I'm sure life will be much richer for this experience. In the meantime, we await the awakening of Mike's cells.

Love to all,

Dan

Day's Rest

2010-03-18T08:42:00.002-06:00

No chemo today. I've finished the 5 days of chemo. Yesterday being the most full, with fludorabine, melphalan, dexamethasone, zophran (an anti nausea) and tacrolinus (anti rejection). One day's rest before I get introduced to Mike at the cellular level. Even though I've known him 57 years, one day seems hardly enough time to prepare for such an introduction. I prefer to go slow with these first meetings; you know, spend some time getting to know one another, etc. Instead, Mike's cells will be thrown into my bone marrow and off we'll go, hand in hand so to speak (or is it blood in marrow?).

I've managed with the chemo so far, but am well aware that the side effects may increase in the following weeks, so we're not through this just yet. Then, once Mike's cells start producing I'll probably be discharged and monitored closely on an outpatient basis to watch for graph host disease, i.e., my body's attempt to reject Mike's cells. Fortunately, we've gotten along over these past years and neither one of us is interested in rejection, so I'm confident we'll be fine.

I've pushed my walks through the hallways to 1.6 miles. Today I'm going for 2 miles, just to keep my good shape. Speaking of which, all the fluid they've given me has pushed me up a total of 9 lbs. Yikes! I was up 12 lbs., but they gave me lasix (a pee pill) and I lost 3 lbs. I feel my appetite slowing so maybe that will help. The hospital food is now officially old, but Susan and Gary are bringing me food from surrounding restaurants. My diet prohibits any fresh fruits or uncooked vegetables--to prevent me injesting bacteria. Boring.

But that's what my doctor says: let's keep it boring.
That's all from Houston. It looks to be another nice day in Texas.
Love,
Dan

Celebrate the Irish

2010-03-16T22:29:00.006-06:00

I've Irish blood from both sides of my family. The names of my siblings tells you my parents were proud of their Irish heritage: Mike, Tom, Dan and Kathy. Had our father not died early in his life, we likely would have had a brother or sister named Pat. Although we had many other types of ethnic blood, our mother raised us as Irish and St. Patrick's Day was a day of celebration. We even attended St. Patrick's school (and St. Patrick's Day may even have been a school holiday--I can't remember. But if it wasn't it should have been.) Our mother remarried 21 years ago, on St. Patrick's Day, and of course, married an Irishman: Bob Walton.

Here's hopin a few of these Irish sayings bring a smile to your heart on this most sacred day:

If you're lucky enough to be Irish, then you're lucky enough.

Wherever you go and whatever you do,
May the luck of the Irish be there with you.

May you be poor in misfortunes and rich in blessings.
May you know nothing but happiness from this day forward.
May good luck be your friend in whatever you do.
And may trouble be always a stranger to you.

May flowers always line your path and sunshine light your day.
May songbirds serenade every step along the way.
May a rainbow run beside you in a sky that's always blue.
And may happiness fill your heart each day your whole life through.

It's easy to be pleasant when life flows by like a song,
but the man worth while
is the man who will smile
when everything goes dead wrong.
For the test of the heart is trouble
and it always comes with years,
and the smile that is worth the praises of earth
is the smile that shines through the tears.

Love to all,
Danny Boy

Sunday Night

2010-03-14T21:17:00.005-06:00

It's Sunday night. Susan has left for the night and only has the parking garage to deal with before she heads to her brother's house. The parking garage is no small endeavor. It took me 3 days to find the closest garage and then to decipher the "yellow chip" payment system here. This medical center is very impressive. It includes at least 4 hospitals, 2 medical schools, and numerous other medical facilities. A small city in the heart of Houston. I have one of the better rooms; on the 11th floor, with a view of the medical center. I also am able to capture the sunsets from my window. Small perks go a long way when you're looking at a month's stay.

Chemo started on Saturday morning and continues through St. Patrick's day. Will I get green chemo that day? Perhaps not, but the luck of the Irish will surely be with me. I get 4 days of fludorabine; coupled with 2 days of melphalan. Then a day's rest and on March 19th Mike's cells are infused. Mike's 60th birthday is March 24th so we're getting all the high points with this schedule. So far the chemo has gone fairly well, other than the massive amounts of fluids. Let me trace it this way: The chemo hits the kidneys quite hard so to reduce the stress on the kidneys they have me on a constant infusion of saline solution. I'm not moving the fluids fast enough (I gained 7 pounds in one day!); so they give me lasix which unleashes the fluids and keeps me close to home, so to speak. The fluids also "fluidize" my blood--their word, not mine. So my white count and red cells are diluted and thus, very low, resulting in my having 2 transfusions so far. Ah, the wonders of modern medicine.

I've walked a mile each day. Although I'm confined to the 11th floor, 5 times around the floor is a mile. Susan (who walks 5 miles or more each day) makes sure I get my butt out there walking. All visitors are required to wear masks and gloves when coming in a patient's room. The contrast with Arkansas is striking. Whereas in Arkansas all transplants are done on an outpatient basis (requiring daily visits to the clinic), here at M.D. Anderson all transplants are in patient. Different strokes. I am impressed with the focus on hygiene here. It would be interesting to learn whether there are differences in rates of infection based on the different approaches to infection control.

So that's the state of affairs. So far I feel like I'm managing well. I do know that the side effects of the high dose chemo may take a few days or week to set in. But so far so good.

Thank you everyone for your good wishes, thoughts and prayers. They are much appreciated.
Love,
Dan

Hospital or Airline?

2010-03-11T19:49:00.003-07:00

I was deboarded on Wednesday but have yet to get on a new flight, so to speak. Received a call this evening from admissions: we regret to inform you that your admission has been rescheduled for tomorrow. OK, I'm not complaining. I suspect that had I not demanded that I be put on the transplant floor I would be in the hospital by now, being attended by some nurse who didn't know the difference from myeloma and my aroma. Once again, we dealt with this delay by indulging ourselves in yet another "fine" meal. Susan says we can't afford any more cancellations. I, on the other hand, am not in any hurry. In my experience, fine dining will always trump chemotherapy.

Dan

A Welcome Delay

2010-03-11T11:12:00.002-07:00

All ready to check in last night, merely awaiting the call from admissions. Instead Dr. Giralt calls. There is one insurance approval that has not come through, they can't reach anyone at the insurance company, and he doesn't want to admit me and then have the insurance company disapprove. So, we get another evening off, which we once again use to go out and enjoy another fine meal. I expect I'll be admitted today, as insurance approval has come through.

I can't resist using this little glitch for a political "teaching" moment. I tend to scream everytime I hear those who are opposed to health care reform proclaim they don't want the government getting between them and their doctors. Who are they kidding? Under the current system there is a big old profit seeking insurance company sitting smack dab in between each of us and our doctors. Most medical procedures deemed necessary by our licensed and regulated doctors must nonetheless be approved by some unlicensed and unregulated insurance adjustor before the patient can receive the treatment. If this system isn't backwards then the sun doesn't rise in the east. I could not list the number of times in the last 5 years that I've had treatments denied or delayed, awaiting approval from some lesser trained and much less knowledgeable person, who isn't licensed to practice medicine but is allowed not only to second guess but to overrule my doctor's recommendations.

Enough. I'll let you know how the accomodations are once we're checked in.
Dan

M.D. Anderson

2010-03-09T20:42:00.001-07:00

And we're off. Susan and I had a fine dinner out tonight. Tomorrow is check-in. Third time's the charm.
Love you all,
Dan

Crossing the T's and Dotting the i's

2010-03-04T21:13:00.002-07:00

We've finished the testing, met with Dr. Giralt and are awaiting hospital admission next Wednesday. The tests provided a bit of good news, i.e., nothing has worsened and the bone marrow is in much better shape than when I was here in October. My plasma cells were at 87% in October and the M protein was 3.7. Plasma is now 28% and M Protein 1.6. (Normal plasma cell levels are about 5%; M protein 0.) Dr. G was extremely pleased with my progress over the past 5 months, and commented twice during the half hour that I looked great. He also offered that when he saw me in October he wasn't at all confident the revlimid could put a dent in the myeloma.

He reviewed other options following transplant, including his plan to put me on either revlimid or pomalidomide 90 days after transplant. He strongly prefers pomalidomide but isn't sure it will be available for this application (post transplant) at that time, but if it is, then that is the course they'll follow. We discussed a few other options. This was quite a change from our meeting in October when I felt I had almost run out of options. Not to minimize the risks of this transplant, but they are thinking and planning beyond this transplant; and they actuallyhave some options available. Nice!

So I've got 5 more days before I'm locked up in the hospital for a month. In years past this might have been reason for a weekend of celebration, but not so anymore. But the weather in Houston has been very nice, almost springlike, so we'll probably try to spend some time outside.

That's it for now.
Love to all,
D

Testing Has Begun

2010-03-01T21:03:00.003-07:00

The day began at 7 a.m. by checking in at M.D. Anderson. A few noninvasive tests, some blood work, and three "consults" to review the transplant process. A process we've been through twice, so it seemed unnecessary---particularly the meeting with the social worker. But they have their procedures, so we tolerated all those questions that we've answered many times over the last 5 years.

We dropped Julia off at the airport this afternoon and she reports that she has arrived safely in Denver. She was of great assistance in helping to get Susan and me moved in to her brother's house. My mother always told me that when staying with someone, I should always remember that fish start to smell after 3 days. I told Gary that if fish start to smell after 3 days, they must be decomposing and full of maggots in 4 months. The poor guy. He's lived alone for the past 35 years and now Susan and I move in. Talk about shock! He's most generous and accomodating. I'm the one who's sensitive about this. Susan, on the other hand, merely says, "he's my brother. Of course we'd stay with him."

Mike left me more than 6 million stem cells last week. (they need about 4 or 5 million). He had to spend a week down here, giving himself neupogyn shots and then spending 2 days in the recliner as they harvested his cells. His output was much less than I've seen in many of the autologous transplants (I spit out 22 million prior to my first transplant) but I don't know if that has something to do with other drugs that are administered when they are harvesting stem cells from the patient himself. I guess I need to get on google and see what I can learn.

Tomorrow is a full day of bone surveys, scans, and biopsies. A bit more rigorous than today. Wednesday is the same and then it tails off by the end of the week. Then I will be admitted to the hospital next Wednesday for the chemo and transplant.

Much love to all,
Dan

Still on Track

2010-02-15T16:45:00.003-07:00

Good visit with Rifkin today. Everything is a go for Houston. He is very pleased with my recovery, and probably a bit surprised, as I was quite compromised when I first arrived back from Little Rock. The bone marrow still doesn't work quite right, but I'll leave that problem to Mike's cells. IGGs are at 1875 (normal being 600 to 1600). M spike is stable at 1.4. White count is a bit low at 2.2 but he is unconcerned about that. One more visit with him next Monday, then we're off to M.D. Anderson.

2010-02-14T23:12:00.005-07:00

The past 2 weeks have presented yet a couple of more challenges. A cough/cold/wheeze lead to an early discontinuation of revlimid. Rifkin cancelled my last week of revlimid to allow my lungs to recover. The CT scan brought some relief, as it showed no pneumonia. But my immune system is ill equipped to deal with cold symptoms, etc. It just takes about twice as long to rid myself of the crud. During this fight with the crud (I get it every February), I got hit with the worst of the steroid withdrawal, including the shakes (DT's?). This has not been fun, but today it feels like I'm come through the worst. I've got one week left of low level steroids (10 mg. every other day). So, enough of my complaints. Everything is a go at M.D. Anderson. My brother has been through a couple of days of testing and they'll harvest his stem cells within a week to 10 days. Susan and Julia will depart in Susan's little Subaru on Feb. 26th and I'll follow by air the next day. Testing starts March 1.

Catherine will start training for the NYC triathalon in about a week. She is doing this to raise money for the Leukemia Society. Check out her web page: http://pages.teamintraining.org/nyc/nyctri10/catherine.

I'll try to provide one more post before we start our sojourn to the south.

Love to all,

Dan

We Have a Date

2010-02-02T08:38:00.005-07:00

I've begun the 2nd week of my last cycle of revlimid. I had a 2 week break due to low white count, which brought concern about whether the IGGs would start an upward trend. Fortunately, the steroids apparently held them in check. IGGs at 2021. M spike went up from 1.4 to 1.5. Rifkin says its time to go to Houston. We are tailing off on the steroids (decreasing the dosage by 10 mg. each week). Brother Mike will be in Houston this week for his first round of tests. Mainly blood work I think. Then back in 2 weeks for a fully week of shots and stem cell harvesting.

My testing begins March 1; admitted to the hospital March 10 and the three drug chemo is administered over the next couple of days. Mike's cells will be transplanted on March 15 and the metamorphosis begins. YIKES!!!! I thought human cloning was illegal. Or maybe this will qualify as identity theft. And the idea of two Mike Patterson's wandering around this earth is likely to cause some people to run for the hills. I told Mike I would appreciate receiving some of his hair cells, as I seem to have lost most of my hair. So there you have it.

Susan and Julia will once again be hitting the road in the days before March 1. I will once again be taking the easy road and catching a flight to Houston, all to meet at Susan's brother, Gary's house. And they complain that I never take them anywhere!

I sit in disbelief at our experience over the last 5 years (On March 23rd it will be 5 years since diagnosis) and have even greater difficulty believing this will be my 3rd stem cell transplant.
While I feel more tired going into this than ever before, I know I have a month to pull myself together, brace for the inevitable, and walk through the fire once again. Susan is in the same place as I am. Not a day has gone by, however, without our being deeply grateful for all the extraordinary people in our lives. We continue to feel your love and support and we know we will endure.
Onward and upward,
Dan

Bound for Houston

2010-01-25T19:55:00.003-07:00

Last week's white count, even after three neupogyn shots, only rose to 3.7, so resumption of the revlimid was delayed until my lab work today. Blood count today was good. White count holding at 3.8, platelets at 94, hemoglobin 10, and hematocrit 30. Good enough to go through another cycle of revlimid (3 weeks). After that, I'll have 3 weeks to wean off the prednisone. Sometime during that 3 weeks we'll be moving to Houston to get tested and prepared for the transplant from brother Mike.

I'll be in the hospital at M.D. Anderson for a month for the transplant and recovery. They'll give me immunosuppressants so I don't get in too big of a fight with my brother's stem cells, then they start the monitoring to see how I'm handling the change from my immune system to his. (I'll even end up with his blood type, rather than mine). Then I'll be "confined" to Houston for 3 months in case I pick up any bugs. We'll be staying with Susan's brother during that time. If I get sick, even so much as a mild cold, I'll have to go to the hospital immediately, as I understand it. I've committed to go to my 40th high school reunion back in Dickinson, over the 4th of July, so I'm planning on departing Houston in late June.

I had to have one final discussion with Rifkin about other options. In his view there aren't any other options. He and Dr. Giralt see this as the opportune time to do the transplant. More cycles of revlimid are not an option due to the risk of increased toxicity and lack of eligibility for the transplant. But, we have accomplished more than what was expected by either Rifkin or Giralt with the revlimid and prednisone. As Rifkin described it, "you'll be buffed and polished and ready for transplant after this next cycle." So here we go. Just call me Mr. Florsheim.

My brother Tom visited over this past weekend. We had a great time, including working through his list of home repair jobs. The topper was the scrabble game on Saturday night, which I pulled out on the last play of the game. A come from behind victory, not unlike the one the Indianapolis Colts pulled out on Sunday.

Thank you everyone for hanging in there with us.
Love,
Dan

Struggling White Count Leads to Hiding in Basement

2010-01-18T21:40:00.007-07:00

First, let me correct a typo in my previous post. My white count as of that date was 1.8, not .8. It remains there. "So what", is the likely response from most of you. But the MM patients who read this will be tuned in to those numbers. My neutrophils were .8 and are now .6. (normal is 1.5 to 7) Neutrophils are the best of the white cells. So, rather than start cycle 3 of revlimid I got a neupogyn shot today to stimulate white cell production. I'm lined up for shots for the next 2 days, then we'll see if I'm ready to start the revlimid. In the meantime I've holed up in the basement to watch sports, westerns and comedies on TV in order to avoid exposure to any nasty bugs.

Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.

Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?

Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.

Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.

Dan

Donor Selection

2010-01-15T14:38:00.002-07:00

M.D. Anderson has preliminarily selected brother Mike as the donor. The criteria seemed a bit ambiguous to me so I don't think there was one overwhelming factor that dictated the decision. Tom thinks its favoritism towards a fellow Texan. He still has to pass the tests to make sure he is fit to be a donor. I've told Tom to stay in the wings in case we need a last minute replacement. Timing is still uncertain but we could be gearing up within a couple of months.

Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.

I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,
Dan

The Blue Moon

2010-01-02T12:58:00.002-07:00

Perhaps you had the good fortune to see the beautiful full moon two nights ago. This was the second full moon in a month and thereby earned the title of "blue moon". This occurs about every 2 to 3 years. The next time the blue moon will fall on New Year's Eve, however, is December 31, 2028. The moon reminded me of one of my favorite songs by Van Morrison. Part of the lyrics are set forth below:

Once every once in a while
Something comes along that feels just right
Once every once in a while
Just like switching on an electric light
And sometimes you try till you're blue in the face
But when you get that feeling
Nothing's going to take its place

Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace

When the wind is blowing
All around the fence
I get that happy feeling
Things start making sense
All just feels so lucky
That you just can't go wrong
Once in a blue moon
Someone like you comes along

Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace.

It's a great tune. And I wish for all of my friends that you find happiness more frequently than every blue moon. It's there for the taking, this I know. Much love to all of you for the new year.
Dan

The "Official" Cycle 1 Numbers

2009-12-28T20:14:00.003-07:00

Although blood is drawn weekly, the blood work deemed most important is that which is drawn the first day of the first week of each cycle. So, for the first cycle of revlimid here are the numbers: IGGs 2300 (down from 4600); M protein 1.7 (down from 3.0). We are all quite encouraged by this response. Other data is also good. White count is back up to 2.6 from last week's 1.9. Platelets 88 (OK for me). Creatinine is down to 1.1--in normal range again, down from 1.6.

I continue to have trouble with the revlimid, such as nausea, vomiting, headache, and fever. These seem to occur during the first week of the cycle and then decrease. It all feels manageable in light of the Arkansas experience as well as the progress being made.

I asked Rifkin today how I could have such a good response to one drug, when 15 high dose drugs were basically ineffective. His response: "That just shows you how much we don't understand about myeloma." I also asked if my response was such that I might have other options, rather than another transplant. The answer: "No." He explained that he hopes to have my myeloma low and stable enough such that I will be a perfect candidate for the transplant. Trying some other treatment which might not work could put me in a position where I would no longer be a candidate for transplant and then I would be out of options. I was close to that upon returning from Arkansas when my red cells, white cells, and platelets were all so low. If they hadn't recovered to the degree they have, I couldn't have a transplant.

I'll probably go through one or two more cycles, then we'll be off to M.D. Anderson. Still no word on which brother gets the privilege of being my donor. Happy New Year everyone. 2010 is just around the corner.
Dan

Stepping Back From The Brink

2009-12-21T20:27:00.003-07:00

I've often said that facing the ups, downs, and uncertainties of this disease is like being faced with trying a losing case. When forced to try a case in court that Iwould prefer to have settled, the number one rule I followed was "never let 'em see you sweat," and you never know what might happen. Since coming home from Arkansas with my dysfunctional bone marrow, transfusions and growth shots (neupogyn) every 2 to 3 days, my blood counts in the toilet, and my cancer levels on the rise, I've had to remind myself of that rule numerous times. So today was, in some ways, as sweet as a favorable jury verdict:

After one cycle of revlimid (3 weeks), the IGGs have dropped from 4600 to 2700. This is tremendous. I also find this response most curious. The super BEAM plus chemo I received prior to transplant in Arkansas consisted of 9 drugs: Carmustine (BCNU), etoposide, Cytarabine, melphalan, thalidomide, velcade, dexamethasone, rapamycin (immunosuppressant) and one more drug, which escapes me; all given at maximum dosage over a 5 day period. The result was a drop in IGGs to 2500, which lasted a week or two at most and then they started climbing again, and a drop in white count to 00, which took me months to bring back. The Super BEAM plus was administered after I had already been given 5 days of 7 drugs, also in high dose, followed by 14 days of low dose chemo with only 3 drugs. So I invite all you more biologically/pharmacologically inclined readers to explain to me how a relatively low dose of revlimid, coupled with a moderate to heavy dose of prednisone can achieve results comparable to those 15 toxins I received in Arkansas.

So what does this all mean vis-a-vis future treatment? Assuming some continued response, which Rifkin seems to expect, my cancer levels are expected to go down to a level that will increase the likelihood of some success with the transplant from one of my brothers. I told Rifkin today I wanted to drive this myeloma into the basement with this revlimid therapy, before the transplant, in order to reduce the amount of disease the new cells would have to eradicate. The complicating factor is my white count. It dropped to 1900 (1.9) and my neutrophils (the really good white cells) are at 1000. I'm officially neutropenic (abnormally low white cell count). Rifkin wants to continue the revlimid therapy at the current dosage (15mg) in light of the good response, but warned me to stay away from crowds, wash hands, stay away from sick people, etc. etc. I think that's why I get sent to the hospital whenever something like pneumonia shows up. Counts will be checked in a week.

Other blood work looks good and the creatinine (indicates kidney function) is back to 1.3 (high end of normal).

Still no word on which brother's stem cells will be used, but momentum seems to be building for that cage fight. Trash talking between the bros has already started.

Best to all of you.

Dan

Stem Cell Cagefighting for Christmas

2009-12-17T22:20:00.003-07:00

Not surprisingly, my two brothers continue to be complete HLA matches, i.e., they match the 10 identifiable antigens (HLA=human leukocyte antigen). These antigens regulate how the body recognizes and rejects foreign tissue. The doctors have not yet decided which brother's stem cells to use. Once again I suggested Mike and Tom "take it out back" and I'll take the stem cells from the winner. Rifkin's assistant was initially appalled, then realized I was joking. Or was I? Perhaps a stem cell cagefight for the holidays. We could make it a fundraiser and send the money to stem cell research. Once again it seems I'm getting my brothers into a fight, just like I used to do growing up in ND.

Blood work this week was good for me. White count 2.7, which is good for me when I'm on chemo; hemoglobin 10.2, hematocrit 32 (quite good for me on therapy) and platelets 71--stable. No word on IGGs. They'll be measured this Monday when I start cycle 2, results probably after Christmas.

This week I'm off revlimid, which is nice. That little pill really tires me out and makes me lightheaded. I function on it, but when I get off it, I realize the work involved in day to day activities. My skin is once again peeling off and I haven't been sunning myself. I feel like a snake--molting. What's up with that? My neuropathies are also worsening. The left foot continues to lose feeling. I think that as the years go on and therapies get piled on top of one another, my tolerance lessens. That being said, I always tell my doctor I'm doing fine. I have few options left and do not want to provide any basis for either discontinuing the treatment or reducing the dosage. Numb feet presents all kinds of opportunities. Walking on hot coals; walking barefoot on the ice; wearing shoes 2 sizes too small, kicking the walls, etc. The circus beckons. On the other hand the numbness will likely interfere with my workouts on the balance beam and pogo stick.

The pneumonia is gone, I think. Chest x ray today will tell the tale.

That's it friends. Have a great holiday, Christmas, Hannukah or whatever you celebrate. We wish for you much love, peace, and prosperity for the coming year and are filled with gratitude we have such a wide circle of fine family and friends.
Dan

Pneumonia Comes Early This Year

2009-12-09T13:19:00.004-07:00

I have had pneumonia for each of the past 5 years, usually in February. This year it hit me in December and I was ordered to the hospital last Friday. Nothing like checking into the hospital for the weekend. But I broke out, am home and feel much better. A few IV antibiotics seem to do the trick. This stuff shows up in the exact same place in my left lung every year. The CT scan did not show any obstruction or scar tissue so I'm saved from having a scope shoved down my throat. I do know that you can develop a susceptibility to this stuff and it seems I've got that.

I also had a relatively good meeting with my orthopedic surgeon this week. He continues not to want to do anything surgically, which is OK with me. He also showed me on the PET scan and MRI films that the new lesions on the arms and legs aren't really very bad. In fact, you can see the evidence of myeloma in the marrow portion of the bones, but it has not worked its way into any destruction of the bone. So, if the revlimid works, perhaps the bone marrow will heal and no bone will be eroded. I do have one vertebra pushing very close to the spinal cord, but no symptoms of cord involvement. So that's a good thing, too. We ended on a positive note with him exclaiming that for a patient with myeloma I am doing great.

Kidney function is improving. Creatinine is down to 1.4, almost within normal limits. If I drink any more water I'm going to float away!

This pneumonia did have one positive aspect which is it caused my white count to go up. All the way to 6.2. Now that is right in the middle of normal, but for me, as my doctor said, its akin to a normal person being at 25. The good part is that my marrow was able to muster a response to the infection. Something is working in the marrow, which is more than could be said 5 months ago.

I finish up the first cycle of revlimid this week. We'll check the IGGs when I start my second cycle, although no progress doesn't mean it's not working. Sometimes it takes 6 weeks or so to see movement.

That's the status for now. Best wishes to everyone, happy holidays, and I sure wish it would warm up. I am reminded, with this 0 degree weather, why I left North Dakota. Apparently I didn't go far enough south.
Dan

And A Few More Things

2009-12-02T18:46:00.008-07:00

Remember all those baby diseases, like measles, mumps, etc.? Well, it seems whatever immunities I had have been wiped out by the high dose chemo and transplant. I have no immunities to mumps, measles, polio, rubella, hepatitus A, B, or C, tetanus, and probably a few others. The debate among my doctors is whether to vaccinate me now or wait until I've finished with my chemo and/or next transplant. I guess I'll stay away from infants and unvaccinated small children.

I've found some relief from the dizziness and headache--sleep. I've been tryng to get through the days without my afternoon naps but have realized that depriving myself of the 2 hour nap in the afternoon was leading to the headaches. So I've resumed my napping and my head has settled down.

The revlimid is also causing more neuropathies. But, I've found a temporary solution for that as well. A heating pad beneath my feet at night seems to help with the pain, keep my feet warm and reduce the muscle cramping in my lower legs. I can't believe I've wrestled with cold feet for the past 3 years when such a simple solution lay at my feet, so to speak.

In addition to the blood counts, we're also watching the measures of my kidney and liver function, creatinine being the main one. My creatinine was slightly elevated when I returned from Little Rock. 1.0 being perfect and I was at 1.2. It has now risen to 1.6, which is too high. So far no remedy other than being told to drink more water. We have to be vigilant as the chemo and the myeloma are known to adversely affect kidney function. I've also got much more iron in me than I need. This is due to the multiple transfusions and is also a trait of the myeloma--it holds onto iron apparently. So that requires another drug in the morning before I eat. That drug has some awful side effects, but we're muddling our way through.

As the years go by with this nastiness it does feel that the complications and side effects become more complex. I still bounce back but it does seem the bounce isn't as high as in the early years. I'm sure my age is a contributing factor. We're not getting any younger, as they say. Which reminds me; I watched the Rock & Roll Hall of Fame concert the other night on HBO. OMG, does Mick Jagger look tired!! That Rolling Stone has rolled a little too long. And with that, I'll close for now. ROCK & ROLL.
Dan

Revlimid Revisited

2009-12-01T10:54:00.003-07:00

One week of revlimid down, 11 (or 17) to go. Having been on revlimid before, I expected to tolerate it fairly well and but for the dizziness it's going OK. I suspect the dizziness is due to the combining every other day prednisone with it. Last time I only took steroids once a week with it. Anyway, not surprisingly it's had an effect on my blood counts. White count dropped a bit from 3.4 to 2.8. Hemoglobin is down to 9.9 from 10.1. Platelets are taking the major beating, having dropped 46 points, from 117 to 71. That explains the bruising on my arms and legs. The slightest bump and I've got a big black and blue mark. Adds to the image of being a warrior, I guess.

It's too early to know if the drug is having any effect on the cancer. That will take 6 weeks or longer. Rifkin continues to look for other options and told me he is meeting with some Japanese pharmaceutical reps to see if he can get HSP 90 (a drug that has gone through clinical trials and had some success, but for reasons I don't understand, is not being produced anymore). This is supposed to be a nontoxic chemo, ie., no side effects. Wouldn't that be nice?

We had a great Thanksgiving. As usual Susan prepared a feast fit for an army and we all indulged ourselves for days on her great cooking. My mom and her husband came down from North Dakota and we were also joined by my nephew, Rob Scheeler (who is in grad school at CU) and his girlfriend, as well as a few other friends. This was the first visit with my mother since we headed off to Little Rock, so it was long overdue and we had much ground to cover. We did our best, spending long hours around the table. Julia especially likes to hear of the exploits of my brothers, sister and me when we were young. It was mostly stories about Tom and Mike misbehaving, however, as I was usually at church, doing my duties as an altar boy.

And that's the status this Thanksgiving. Continuing on our journey, one day at a time.
Best wishes to all for a peaceful holiday season.
Dan

Getting Reved Up

2009-11-13T15:19:00.003-07:00

As expected, I will return to a revlimid regime. That is the consensus of the docs at M.D. Anderson and Mayo. One pill (15 mg) per day, along with my every other day prednisone. Initially Rifkin was going to couple it with dexamethasone, rather than prednisone (both steroids, but they act a bit differently with the revlimid). But after much discussion with Susan, who reported (she is always the Greek chorus in our doctor visit) that I was handling the prednisone quite well, in fact, maybe too well, as I always seemed to be happy and laughing--particularly at my own jokes, Rifkin said, in that case we'd stay with prednisone and keep me happy. He did say we might change over to dex if the data suggests dex to be a more effective boost for the revlimid.

Given that I don't qualify for any pomalidomide trials at this time, this is about the only option available. The results of all the testing show that my disease is progressing. While the bone marrow biopsy showed only 22.5% plasma cells, Rifkin was quick to discount that since myeloma grows in a swiss cheese like pattern. So the biopsy can hit a pocket with high concentration of myeloma, or a very low degree of myeloma. Remember the "if it's too good to be true, then it's likely not true" posting while in Arkansas when my plasma cells went from 90% to 5%? Right. There were some good numbers tucked in the biopsy results and as he said, "the prednisone did its job," which is to hold my myeloma in check while my blood counts stabilized. There is still concern about what the revlimid might do to the blood counts since my bone marrow doesn't work as well anymore.

And then there were all the bone studies, which is really what showed the progression of the myeloma. I have multiple new compression fractures in my back. This was a surprise to me since I thought that all my vertebra were already fractured from T1 all the way down to L5. Well, if they weren't before, they are now. A couple of troubling spots that made Rifkin plead with me to go see my orthopedic surgeon. I avoid those exams as they are so painful as he pushes on each individual vertebra to determine its stability and my degree of pain at each level. I used to come home from those exams and take a percocet or dilaud. So, here we go again. The MRI and PET scan also showed more lesions in the humerus (upper arm), femur (thigh), sternum, and ribs. These are areas where the myeloma has attacked the bone. Nothing so serious that I am at risk for fractures, but enough that I have to get on some drug to stop the progression.

I prepared for this exam as if it were a real exam: I picked up copies of all tests yesterday, read them, highlighted them, wrote in the margins, went back and looked at most of my test results over the last 4 years, and wrote down 2 pages of questions. Maybe Rifkin should have been preparing for my questions! Oh, he must enjoy my examinations (pun intended).

I will only feature a few questions that might be of interest to you:
1. Are the bone lesions reversible? Yes, the revlimid can stop the progression of the disease and in time the bone can heal.
2. Are my kidney and liver funtion OK? Yes, they are within normal limits. (Kidney function is often adversely affected by myeloma).
3. When do I start and how long will the revlimid regime last? It will take about 10 days to get the order in, get me approved and have the first prescription delivered. We will probably go through 6 cycles (21 days each cycle), then we'll reevaluate.
4. Are there side effects to the revlimid? Yes, primarily causing a drop in the white and red cell counts and/or platelets. This is of concern due to my poor bone marrow, so we are starting on a lower dose than they might otherwise. Neuropathies are generally less than with thalidomide or velcade.
5. What next? If the revlimid works, then off to M.D. Anderson for the mini allo transplant from one of my brothers. I would be hospitalized for a month, then required to be in Houston for 3 months in case of complications. We would stay with Susan's brother Gary, which would be much nicer than having to rent an apartment and move a carload of furnishings.

And that, my friends, is the medical report. What a life! But I'm still laughing. It may be drug induced laughter, but that matters not--I'm still laughing, and every day continues to be a treat. Thanks again to all of you for keeping us going. We love you.
Dan

A List of Ditties

2009-11-06T10:21:00.011-07:00

Household woes: Remember our flood this spring, just after we returned from Little Rock, where Julia's room flooded from a leak in the foundation, for the third year in a row? Well, it happened again. Fortunately to a lesser degree and given the inability of any contractor to fix this problem, we've decided to do nothing at this time. I've advised Julia to wear her swimsuit while in her room as a precaution.

Then, when we returned from M.D. Anderson, we had our furnace inspected and were told we need a new furnace. We're waiting for a 2nd opinion before we lay out that cash.

Health Insurance scare: A few weeks ago I received a letter from Dr. Rifkin's clinic advising that negotiations between Rocky Mt. Cancer Centers and Blue Cross had broken down and RMCC physicians would no longer be a part of the Blue Cross network. The financial impact of that would be disasterous for us. Summoning my rusty lawyer skills I immediately called 3 people at Blue Cross as well as a couple of people at RMCC and gave them a piece of my mind. I then called Rifkin at night on his cell phone and offered my mediator skills to help resolve the impasse. (I love the fact that Rifkin will always take a call from me). Not that I am due any credit, but I received a letter today indicating the parties had resolved their differences and RMCC will remain in network. Had they not reached agreement, RMCC would be out of network for me and subject to a $6000 deductible, plus paying only 70%, while other centers, such as M.D. Anderson would be in network and therefore subject to a much lower deductible, after which they would pay 100%.

Who said we need health care reform? After 15 years of doing insurance litigation and after more than 4 years as a patient drawing upon health insurance, I continue to be an advocate for a single payor system. When you become seriously ill (especially when its through no fault of your own) and can't work at your previous profession, you should not have to deal with whether you will be able to get the care you need or whether you will face financial ruin trying to stay alive. Dealing with an illness is stressful enough without compounding the problem by injecting such financial uncertainties into one's life. While the polling shows that most people are satisfied with their current health insurance, I am quite confident that a vast majority of those people have not had many claims made on their insurance. Once you are forced into constant use of your health insurance you see how broken the system is. OK, I'll get off my soapbox now.

The new MRI/Sauna: I had another 1 1/2 hour MRI at M.D. Anderson. This time in a new machine. First, I've been fighting a cough for about 3 weeks and told the technician I hoped I could get through without much coughing, but I had cough drops to help. I was told to spit out the cough drops and no coughing would be allowed. Hmmm. OK, so I think, I'll keep my throat moist by swallowing. In I go. The hammering noise starts. I want to cough. I swallow. The technician yells through the microphone, "No Swallowing. Don't move." Right. Don't cough, don't swallow, don't move. I did the best I could, but was reprimanded repeatedly for swallowing. And then there was the sauna. I was warned that this machine heated up much more so than the old model. About 20 minutes into this scan a sweat breaks out on my forehead, dripping into my eyes, ears, nose, etc. I dare not move. When I come out an hour later my scrubs are soaked with sweat. I look like I've been in a sauna or just finished a rigorous workout. I walk out into the dressing area where other patients are waiting to be scanned. They look at me quizically as if to say, "what is going on in there?" Of course, most of them are not scheduled for the full body, 1 1/2 hour scan so they won't have quite the workout I did. A nurse walks by and says, "you're overcooked."

Bone Marrow Surprise: This past Wednesday I'm scheduled to see Rifkin to discuss the M.D. Anderson recommendations. When I check in they tell me I'm early for my bone marrow biopsy.

"What biopsy?"
"Oh, no one contacted you? Well, have you eaten this morning?"
"Yes, I just had breakfast."
"Well, you can reschedule or you can have the biopsy done without anesthesia."
"Let's get it over with," I say and I have yet another biopsy without pain medication. I did get some ativan to help me forget the procedure. Either the ativan is working, or Rifkin is really good, as I don't remember it being too painful.

Sleeping Pills: I've finally begun weaning myself off the sleeping pills. My sleep cycle was messed up after Little Rock and then I started with the every other day steroids which led to my taking sleeping pills nightly since I returned to Denver. It was either that, or not sleeping and feeling doubly exhausted. The last few nights I've been able to sleep without the aid of Lunesta and I'm elated. Clear headedness returns!

Return of the World Traveler: Julia returned to Denver this Friday after spending the last 2 weeks in Dubaii and Pakistan, with one of her best friends. She has regaled us with stories, including a confrontation at the Lahore airport where she stood her ground while a Pakistani tried to shake her down for more money for a phone call. She also underwent quite an interrogation by customs, questioning just what she was doing in Pakistan. But what an experience she had. I told her that with these travels she is likely to be on some government list of people to watch.

NYC Fits Like a Glove: Catherine loves the Big Apple. Susan's genes are alive and well in our eldest daughter. Cate thinks there's no place better than NYC. She sounds so happy, loves the city and her job at Yahoo. Once she gets some furniture in her apartment I'm sure Susan will be paying her a visit. The question is, will Susan ever return?

The Short Term Treatment Plan: While we are waiting for all the test results the path forward seems to be pointing toward adding revlimid to the prednisone. That will be tolerable. We hope it does some damage to the myeloma cells so the mini allo transplant can go forward. If so, we're likely to have that done at M.D. Anderson in Houston. As always, we don't plan very far ahead. One step at a time, one day at a time.

Reflections: I think the best description of our state of mind would be, we're tired. The last year has been difficult to say the least. The trip to M.D. Anderson was too reminiscent of Little Rock. We feel like we have to gear up for another long siege and there are days we aren't sure we have the energy for that. Tracking the test results, the numbers, the cancer levels feels at times like a diversion from the heavier issue of dealing with an incurable cancer. In our own private thoughts I know we are probing and searching for some meaning in all this. Sometimes we talk about it but most of the time we prefer not to think about it. The "we" I speak of isn't just Susan, me, Cate and Julia, or even my brothers, sister and mom. It is all of us--yes, you included. I can sense the compassion, concern and yes, even the fear. Fear of loss. It touches me deeply. But none of us should be afraid. This experience has caused many of us to look at our lives differently, and in many cases to live with greater depth, compassion and understanding. I continue to trust and to know that things are as they are supposed to be. As many of you know I have been blessed to have a spiritual teacher whose teachings and practices have provided a vehicle for me to work toward transcending this disease. Oh, I have my days. But most of the time, with the help of my meditation practices and the support of so many people, I am filled with gratitude for being given a life filled with so much love and compassion. Thank you.

Dan

M.D. Anderson Consults

2009-10-29T11:45:00.005-06:00

We've finished our consults with the doctors here at M.D. Anderson and now I just having testing to complete over the next 2 days. We also have a few tests that will be done in Denver (bone marrow biopsy and skeletal survey.) We met with the head of the transplant team (Dr. Giralt) and the head of their myeloma treatment team(Dr. Orlowski). Dr. Orlowski and his father developed velcade. These docs are going to communicate with Dr. Fonseca at Mayo in Scottsdale regarding my case and get his input as well. So, at a minimum I feel I am getting the best advice possible from the best myeloma treatment centers in the country. (Dr. Barlogie, Dr. Rifkin, Dr. Giralt, Dr. Orlowski, and Dr. Fonseca). Unfortunately no one has a silver bullet for this disease. The short term strategy is to add a chemo drug to the prednisone to try to get the cancer levels down. Orlowski recommended revlimid. Giralt talked about pomalidomide and bundamistine (sp?). We'll be discussing this with Giralt by phone on Monday and we see Rifkin on Wednesday. Mid term strategy is to be ready for a mini allo transplant (from one of my brothers) if we get my cancer levels down. It seems that it is very unlikely, given the resistant nature of my myeloma, that any chemo drug would give me remission or even long term nonprogression of my disease. So, we have to consider the mini allo transplant with all its attendant risks.

One of the interesting things Giralt is working on is use of a vaccine as part of the mini allo transplant. They would take some of my myeloma cells, kill them, then inject them into my donor to provoke an immune response before transplanting the donor cells into me. Because the myeloma cells are dead cells, this process presents no additional risk to the donor.

We'll make some decisions next week, I suspect, at least with respect to the short term strategy. That's it from Houston for now.

Dan

Halloween in Houston

2009-10-15T21:50:00.004-06:00

A sit down, of sorts, with Rifkin today to discuss the "plan." I had my list of questions that Suz and I put together yesterday. We're booked for 3 days of testing MD Anderson starting Oct. 28th. We'll follow that up with a conference call from Denver the following week to receive their recommendations re treatment. To say we're not looking forward to it would be an understatement. Visions of MRI's, Pet Scans, bone marrow biopsies, etc. in Little Rock haunt me. We're assured MDA is not Little Rock, although we're also told to expect the full workup. Rifkin has already discussed my case with Dr. Giralt at MDA. I say that my conversations and the paperwork from MDA look like they are planning another transplant for me. Rifkin says they will probably recommend a mini allo transplant (from one of my brothers) if we can get my cancer levels down with chemo first. Nothing set with Mayo yet except we're told I don't qualify for the current pomalidomide trial because I did not fail to respond to revlimid. As noted in the previous post, Mayo will be starting another pomalidomide trial, maybe as soon as November, that will not require a revlimid failure to be eligible. So, following the MDA workup, we'll take a trip to Mayo in Scottsdale and at least get on the list for the next trial. Rifkin instructed us that our job at MDA is to learn as much as we can, ask many questions and bring the info back to discuss with him. As he said, these are the people that are running the clinical trials with these new drugs and have the most knowledge about how people respond, side effects, etc. So, I guess I'll put on my best lawyer interrogation hat and try to get that Ph.D. in hematology/oncology.

The idea of a mini allo transplant is disconcerting. Over the years, and with the various doctors and nurses who have treated me, we have heard all points of view. We've heard from both Rifkin and Barlogie that it is very risky and also that it can be a true cure. I guess both statements are true. It seems that Rifkin's goal is to find a treatment for me that will bring my cancer levels down and then deal with the question of whether to take the risk of a mini allo transplant. Since there is no way to prepare for making such decisions, we try to put that issue on the shelf and deal with it if and when we have to. I will say this much: Rifkin has managed to stabilize my disease so that we at least have a chance to participate in a clinical trial and bring down the disease levels. In May and June when I was getting regular transfusions and neupogyn shots I was not very optimistic. An every other day dose of prednisone has done what massive amounts of chemo could not---keep an angry disease at bay. Go figure. Rifkin was clear, however, that this won't hold forever and so now is the time to start treatment.

Final note: counts remain stable and continue to slowly go up. White count: 4.4, hematocrit 28, hemoglobin 9.6, platelets 122. No IGGs to report. The cancer center hasn't yet received its doses of H1N1 vaccine (swine flu) but because Julia is a health worker she will get her vaccination next week and can also get the vaccine for any family member in a high risk group (like me being immunosuppressed). I will be taking advantage of my connections in the health sector!

I'll check in once we return from MDA. Until then, Happy Halloween.
Dan

The Trials of Trials

2009-10-12T22:50:00.016-06:00

First, thank you once again to all who donated to Light the Night. Dan's Team will likely exceed $15,000 once all monies are collected. We had a great time at Darin and Liz Schankers before the walk as well as during the walk. My friends from the Leukemia and Lymphoma Society once again put together a great event. Thank you Joni, Amanda, Tamara, Rebecca and everyone at LLS.

Second, we are trying to keep our chins up as we absorb the Rockies loss to the Phillies in the National League Division Series. Leading 4-2 in the top of the ninth inning, the Rockies couldn't protect their league and lost 5-4. Season over. Ah, what is it those Cubs fans have said for years? Wait 'til next year.

I see Rifkin on Thursday, but don't expect there will be any news. I've spent the last week on the phone with the researchers in charge of clinical trials at MD Anderson and The Mayo Clinic. I'm currently scheduled for a workup at MDA in Houston the end of this month.

We're still working with Mayo. They are not sure I qualify for the current pomalidomide trial as they are unsure whether I ultimately failed to maintain a response to revlimid. Revlimid is a derivative of thalidomide. Pomalidomide is also a derivative of thalidomide, but with fewer side effects than revlimid or thalidomide. Anyway, 2 years ago I responded well to velcade/revlimid/dex, but Rifkin took me off it because of his concern about toxicity. The current pomalidomide trial requires participants to be refractory after treatment with revlimid, i.e., the disease starts to progress while under treatment with revlimid. Rifkin is taking a closer look at my records to see if I still might qualify. If not, there is another pomalidomide/dex trial that Mayo will be starting, perhaps in late November, that does not have this eligibility requirement. However, Rifkin seems a bit uncomfortable with my waiting that long to get treatment. Mayo suggested I could consider going on Revlimid/velcade/dex again and if I failed to respond in 30 days I would probably qualify for the current trial. If I responded, well, that would be good, too. The current trial has 20 slots open. The new trial will have 12 slots for Mayo at its 2 sites--Scottsdale and Rochester. Limited slots available, act now?

So, options appear to be 1) go back on revlimid as discussed above; 2) stay on prednisone and wait for the new trial to open; 3) follow the recommendations at MD Anderson (not yet known). By the first part of November we'll have better info. That being said, I'm sure of a couple of things. First, Rifkin wants me to get the newest treatment available and wants me to get evaluations at both MD Anderson and Mayo. He is therefore, not likely to strongly recommend trying revlimid again. That being said, however, ultimately he will tell me it is my decision. I've been here before. He'll say, here are your options, no one knows what will work, all choices are reasonable. There are many variables here. Revlimid hits the white cell, red cell and platelets hard and my counts have taken a beating. No one could guarantee they will recover. If I go straight to pomalidomide and don't respond, there aren't many choices left (I like to have a drug or 2 "on the shelf" if current treatment fails, if at all possible). If I have to be in residence for some period of time for the trial, MD Anderson would be better because Susan's brother lives in Houston. If I could qualify for the current pomalidomide trial at Mayo they would let me take the drugs here in Denver and be followed by Rifkin, with perhaps once a month visits to Scottsdale. And then there is the question of insurance. I'm not sure what my health insurance will cover. One of the uses of funds raised by Light the Night is to assist patients with funds to pay for the ancillary services necessary to participate in clinical trials. The drug manufacturer usually doesn't charge for the drugs, but there are numerous other costs, such as lab work, imaging studies, drugs to counter side effects. Health insurers often don't cover anything associated with a clinical trial because they deem it "experimental." These are but a few of the issues we are wrestling with.

So we'll just let this percolate for awhile, get more information, and trust that things will work out, as they always do.

Love to all,
Dan

Our Amazing Friends/ With Addendum

2009-09-30T23:39:00.007-06:00

As of this moment you, my friends, have donated $9970.00 to the 2009 Light the Night. Thank you for your generosity. I think the total for Dan's Team over the past 3 years is now close to $60,000. The walk is this evening and although the weather here in Denver is expected to be cool and rainy (please no snow), I hope we'll get close to the goal of 100 people walking for Dan's Team. Thank you, everyone, for supporting the fight against blood cancers.

The meeting today with Rifkin was promising in terms of the number of new drugs that are in various stages of development. Although pomalidomide and carfilzomib are furthest along, there are many others that we should see in the next 5 years or so. The research and development of these new drugs is greatly aided by the Leukemia and Lymphoma Society's financial support from its Light the Night walks around the country.

No news on the eligibility for the clinical trials yet. So Rifkin invited me to email Mayo and M.D. Anderson and see if I could get their attention. Yeh, I know how to be a pest when I want to, so I suspect within the next few weeks we'll know something definitive. In the meantime, my numbers continue to hold. In fact, the white count, hematocrit and hemoglobin, and platelets moved up a notch since last visit (still below normal, but holding). There appears to be some discrepancy between the IGGs measured here and in Little Rock (ones here are higher--hovering around 4700), but holding there. Rifkin said he has a few patients whose IGGs have held around 5000 for 15 years. I'll take that.

I still have issues with my back and my feet and will be going back to the orthopedic surgeon as it feels like something is amiss again in the lower back. In addition to being numb my feet also spontaneously cramp up, with the toes curling under and locking up. Rifkin attributes this to the prednisone and said, not much more I can do about it (I already take a vitamin B complex, vit. E, L Glutamine and magnesium for the cramping, but they don't help much). Perhaps, after all these toxins I am morphing into a hobbit. That would seem to fit with the loss of height, the expanding wasteline, etc. But all in all I'm certainly doing better than mid May when we returned to Denver. Quite honestly, I don't feel like I'm on the verge of death anymore. Rifkin has done a wonderful job of bringing me back from the abyss through his very patient, less toxic approach to my disease.

The management of the anxiety that both Susan and I felt upon our return to Denver has been quite a challenge. We continue to learn to let go of those fears. I am at a place today, thanks in large part to my meditation practices, that I would describe as almost being incapable of worry. We have been forced to face and accept the uncertainty of our future and as a result, have learned to find great joy in most days. Whatever time we have left we will live to the fullest. A good prescription even without a cancer diagnosis. We treasure our family and friendships and trust that things are as they are supposed to be. It does seem that things work out when we stop trying to control the outcomes. The worry over whether my bone marrow will recover, will I be able to get more treatment or qualify for a clinical trial, will my angry disease calm down, is enough to consume you if you allow it. Fortunately, we quickly pulled ourselves out of that muck, and Susan always gently puts on the brakes when my mind wanders there.
So, today will undoubtedly be a good day as we Light the Night. Thank you again for everything.

With much love and gratitude,

Dan

Addendum: Spoke with M.D. Anderson today and they are interested in interviewing me and considering me for one of their clinical trials. I will likely have to travel to Houston soon for the intake. Dan's Team has exceeded its fundraising goal, thanks to you. We are now over $11,000 in donations. Thank you so much.

Light the Night Update

2009-09-25T11:57:00.003-06:00

A big thank you to everyone who has donated to Light the Night once again this year. We have raised more than $5,000 and the last week is always when the donations really start flowing. Are all my friends procrastinators just like me? So, if you are planning on donating now is the time. The Walk is one week away: Thursday, October 1. See my website for details: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN

A few logistics: The party at Darin and Liz Schanker's, sponsored by Bachus & Schanker, LLC, (www.coloradolaw.net) is a great event, with drinks, barbecue and lots of good cheer. You won't want to miss it. And they want to be sure to have enough for everyone, so if you are planning on attending the party, please RSVP now to Linda Snyder at marketing@coloradolaw.net. We'll walk to the park from there for the Light the Night. The party starts at 4:30 p.m.; see website above for their address.

If you can't make the party, we will meet you at the tent with the banner: Dan's Team.

This Walk is a lot of fun, especially with a good crowd, so make time for yourself and to support this cause. See you there.
As always, we are grateful for all your love and support,
Dan

Hope for a Clinical Trial

2009-09-22T13:17:00.004-06:00

Ah, there's nothing better for the soul than a beach vacation. We returned on Sunday from a week on Sanibel Island with our friends, the Dowells. Inactivity would be the best way to describe my time in the sun. Rifkin relented just a bit and gave me permission to swim for a short time in the sun. So every day I took a swim in the Gulf. Otherwise, I hid under the trees or in the condo, took daily naps and ate seafood. We had a fantastic, relaxing time; only to have to face the blood draw and meeting with Rifkin on Monday.

On that front things remain about the same. White count at 2.9; hematocrit at 28; hemoglobin at 9.9; platelets at 108 and IGGs at 3700. Rifkin has spoken with the principal investigator at the Mayo Clinic in Scottsdale, AZ about my participation in the pomalidomide and/or carfilzomib clinical trial. Portions of my records will be sent there, as well as to M.D. Anderson in Houston, to determine if I qualify. If so, we then have to investigate whether I will need to be on site for the trial, or part of it, or whether Rifkin can oversee my participation here in Denver. He thinks it unlikely I'll be able to stay in Denver. We should learn more at our next visit in 10 days. Either way, it seems to me to be an improvement over Little Rock. Susan's brother lives in Houston so that would be the preferred site for us if I have to stay for any period of time.

The prospect of spending another winter fully engaged "in treatment" is not the most appealing thought. But, I don't think this will be even comparable to the aggressive treatment I underwent in Little Rock. I've read the blog of at least one patient who has been in the pomalidomide trial at Mayo in Rochester for over a year. I think he now goes in for testing only once a month. Could I be so lucky? I know we have to do something, as my energy is waning, whether due to the cancer, the steroids, or something else, no one knows. But I do feel it's time for some action. Anyway, I guess I continue to be the guinea pig for the comparison of the two philosophies: blast it or control it. Blast it didn't work, so let's control it. Keep those new drugs coming. To support that cause go to my Light the Night site: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN

As I felt my mood start to dip with the thought of another round of treatment in some foreign state (I love Colorado and hate to leave), Susan confidently told me to cheer up, we'll get through this, and she'll go with me wherever I need to go. What would I do without her?

And a brief update on the girls: Julia's paid summer internship with the Colorado Dept. of Health has turned into a full time position. She has already begun work as an Environmental Health Specialist and will be doing health inspections at restaurants, day care facilities, condemned residences, as well as other public health duties. She is quite excited. Although Julia was ready to move into her own apartment if she got this job, given the probability that Susan and I will be taking up residence in either Houston or Scottsdale, she has delayed those plans. I guess it's OK to live in the parents' house so long as the parents aren't there. Catherine began work for Yahoo! this week and has also managed to find a studio apartment in NYC (probably the size of a closet!). She says she loves the city and is also very excited about her new job. Susan is already plotting when she can go visit.

and that's about all for now. I'll report once we see Rifkin in 10 days and we know whether we're going back on the road.
Love to all,
Dan

Is Relaxation a Cure?

2009-09-09T16:11:00.009-06:00

Rifkin's words of encouragement today: "you could live with this," meaning it would probably be alright if my numbers held steady where they are. I guess that means we're continuing to have some stability. The white count has dropped a bit (just before flu season--not so good), but otherwise things look OK (haven't gotten IGGs checked in a couple of weeks, but we're assuming they are also holding). But since this myeloma doesn't hold still forever, Rifkin is continuing to investigate clinical trials that might be available. So far no responses to his inquiries but he will be at a meeting this weekend where he can ask some of the people who are running the trials, so we should know something next time I see him.

My approach to the "your disease is quite angry" has been to seek relaxation with the notion that perhaps I can calm this down from the inside out, since the chemo attack from the outside doesn't seem to have worked. In that vein, I have increased my daily meditation to the point that Susan sometimes wonders if I'm ever coming up out of the basement. She and I also went on a little retreat, renting a cabin in the woods at a meditation/yoga retreat center. Those few days allowed us to forget this cloud hanging over us, at least for a little while. And, Rifkin gave me the green light to accept an invitation from our friends, the Dowells, to join them for a week's respite in Florida. Rifkin was a bit nervous about my getting on an airplane with all this H1N1 flu stuff in the news, but thinks its early enough in the flu season that I'll be OK. To be safe, he prescribed some Tamiflu for the trip. We'll keep our fingers crossed, as last Feb., even though I was on Tamiflu, I ended up in the hospital for 8 days with the flu. Other precautions: I am to stay out of the sun, so I'll either be sitting on the balcony watching the surf or fully clothed with my UV rated long sleeve shirt and pants under the umbrella. Not quite the beach vacation I was dreaming of, but it will provide a break and a chance to get away from "it". We are, of course, very appreciative of the Dowells for their generosity. Susan is especially excited to go since she craves any semblance of normal life. The twice weekly trips to the cancer center and the chronic watching (of me) and the waiting to hear numbers takes it toll. I know she would love to return to our past life, intense,but a life not fraught with the fears and physical limitations of this disease. There is no normalcy in our lives, but we can pretend for a week here or there. Those times become such gifts as they only come during the recovery periods between chemo treatments. Once I start another chemo regime, relaxation becomes very elusive.

Catherine left today for a new job in New York City. She will be working for Yahoo! as an optimization consultant for their on line marketing division. And no, I don't know what that means, but it sounds exciting, right? Anyway, she is quite excited about the job, even though NYC can be a bit intimidating. Susan's cousin, Arlene (who is an avid reader of this blog) and her husband, Jim, picked Cate up at JFK airport today and she will be staying with them for a few days, just north of NYC, while she goes into the city during the day looking for an apartment. It sounds like quite an adventure and we are very proud of her for landing this job and orchestrating a move to NYC (and yes, we have stacks of boxes of her "stuff" in our garage). Of course Susan is thrilled at the prospect of having an apartment available in NYC, having lived in the city for 15 years before I dragged her out to Colorado. I suspect Susan will be spending a lot more time there. We will likely soon be empty nesters, as Julia is hoping to land a full time job with the Colorado Dept. of Health, and if she succeeds, she wants to move into her own apartment. Can we handle the quiet?

The Leukemia and Lymphoma Society's annual Light the Night Walk will be taking place in Denver on October 1. Donations can be made on line at: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN

I am reluctant to do any active fund raising this year in light of the tremendous support we've received from so many people this year. So, no push this year. If you want to contribute, this link should get you there.

Best to all,
Dan

Holding Steady

2009-08-25T19:06:00.007-06:00

Not much change in "the numbers" from last week. IGGs are 3500 (3470 last week); white count 2.8, down from 3.9 (but the more important neutrafils are 2.4--a good number), red count and platelets a bit down from last week. Rifkin thinks the steroids are keeping me in some sort of holding pattern, which in his view is good, as it is giving my bone marrow more time to heal. He prefers to keep me off any treatment (other than steroids) for as long as possible. He also is not currently too fond of either of Dr. Barlogie's suggestions (carfilzomib and pomalidomide) as they both have myelosuppressive characteristics, meaning they can drive down the white and red cells and platelets. Since mine are down already, he doesn't want to harm them any more. I'm also unlikely to qualify for the carfilzomib trial because of my extensive chemo treatment. No word on whether I'm eligible for the pomalidomide trial.

We had a rather sobering conversation about his view that I likely have suffered permanent injury to my bone marrow from the Arkansas chemo regimes and that injury has limited my treatment options. I've discussed this "bet the company" approach in previous posts so I won't repeat it here. On the drive home I felt forced to review with Susan one more time our discussion with Dr. B regarding whether the "super beam plus" chemo would limit my future treatment and she, like me, remembers him being very clear that I would not have any future limitations, other than I could not ever again receive the "super beam" treatment. It's difficult not to get angry about this situation, but I know it is not healthy to go to that place in my mind, so I'm getting pretty good at staying away from it, until it comes up in my treatment discussions with Rifkin. Please understand that Rifkin does not volunteer his views, but offers them only after much pushing, prodding and questioning by me. I'm always trying to find out what new drugs are on the horizon and might be available to me, and I keep running into these barriers created by the Arkansas experience, like your bone marrow can't withstand that kind of treatment. The picture has changed signficantly since the "super beam", and needless to say that becomes very frustrating. Catherine went ballistic last night when she learned the extent of the problem and the limits to what can be done for me now.

That being said, let me say that I continue to be the optimist. I certainly feel better than I did 4 months ago, although I feel like I've reached a plateau of sorts, i.e., I'm not getting any worse, but my efforts at restoring my strength and muscle only seem to keep me treading water. I think this is due to the muscle wasting feature of the steroids. At some point we'll have to start trying to reduce the cancer levels. When that decision is made there are 2 potential drugs that aren't myelosuppressive--thalidomide and HSP-90. Thalidomide is available, HSP-90 is not currently available. HSP-90 is a better drug since it has very few, if any, side effects, but apparently the manufacturer didn't make enough of it to produce more after the completion of the clinical trials.

A few weeks ago I completed my "service" as president of the Colorado Trial Lawyers Ass'n and am now officially a past president. Although I tried to resign 3 times over the past 5 years (all of which were rejected by my fellow officers), and I only served as president for a couple of meetings, the association was extremely generous in thanking me for my service and bestowed its thanks to me in the form of a new, lighter bike. I am completely undeserving of such thanks, but am so proud to have been able to serve as president, even if for only a short amount of time. Our many trial lawyer friends have been so generous and supportive. I do wish the American public would hear more of these kinds of stories, showing what big hearts trial lawyers have, instead of the lawyer bashing that seems so popular these days. This comment is certainly not intended to diminish all the support we have received from our family and nonlawyer friends. My point is only that as a group, the trial lawyers have come forth to assist one of their own, even though, for many of them, I may have been more of a professional acquaintenance than a close friend. Of course, now they are all my close friends.

The best news of the week? Rifkin gave me a 2 week break from my clinic visits. No sticks, pokes, or blood draws!
With much gratitude and love,
Dan

On the Road Again?

2009-08-17T20:30:00.003-06:00

Eight months of my cancer levels running between 50% and 90% and my bone density is normal! Amazing. Is this one of those....if it sounds too good to be true? Well, we won't have a retest on the bone density scan for some time, so absent some unexplained bone breaks, we'll accept the news as good. Maybe I should have realized my bones were OK when I fell out of bed in the middle of the night a few weeks ago, and although I had a bump on my head and a bruise on my back, no bones broke. Of course, I'm so zonked from the meds I take at night for my neuropathies that I have only a hazy memory of Susan trying to get me off the floor. The scan was much less painful.

Blood work today continues in the stable range. White count up to 4.9, red cells holding and platelets at 109. Slowly we move, but in the right direction. I continue to have to take exjade to draw the iron out of my liver but that is giving my GI tract fits, especially when I have to take it with potassium, which I've had to do for the last week. Suffice to say I can't stray very far from the house.

We talked with Rifkin today about the two drugs recommended by Barlogie: carfilzomib and pomalidomide. Both are in phase II clinical trials. Therefore, I have to qualify for the trial protocol. Rifkin doesn't think I can qualify for the carfilzomib trial. He sent some emails to friends of his at Mayo (in Scottsdale, AZ) and MD Anderson (in Houston) to see if I could get into the clinical trials they are running with pomalidomide. He's also meeting with the manufacturer's (Celegene) regional rep this week to discuss what trials I might qualify for. Anyway, I'm still not ready to enroll as my bone marrow is not yet fully recovered. I asked Rifkin if I am accepted into a trial does that mean I have to take up residence there. He said I'd probably have to go there, but not take up residence. He might even be able to get me permission to join the trial and be supervised by him here in Denver. Who would have predicted that my myeloma would bring with it a tour of the country? I think Susan and I should buy a big old school bus, paint it in psychedelic day glow paint and hit the road, stopping at all the medical centers in the country. Remember the Merry Pranksters? Wavy Gravy? The only difference is that my drugs are legal!! Oh, what a strange trip it's been. If you don't know what I'm talking about, you're just too damn young.

In the meantime life continues at its slow pace. My fatigue seems to be increasing and I'm back to 2 hour naps every day. I've been so tired lately that I was sure I would need a transfusion today, but red count has held. Then I remembered that following the first transplant I was exhausted for almost a year, and I didn't have nearly as much chemo as I did this time. The fatigue comes in waves, so I guess I'll just keep riding it.

That's all for now. This blog continues to get 50 to 70 visitors a day. Thank you every one of you for your support. We are very grateful.
Love,
Dan

Ruminations on 'Roids

2009-08-14T00:34:00.002-06:00

1:00 a.m. Can't sleep once again, despite more drugs that should be knocking me out (Lunesta, neurontin, ativan). Rifkin told me that after a while the ups and downs from the roids would even out. I haven't noticed. Bone density scan today. Lots of walking around the hospital looking for the scanning room (I located it with the name "Women's Imaging Clinic." There were no images of women that I could see. I guess women's imaging refers to women's issues with osteoporosis). All the walking reminded me of Arkansas, which is not a good memory to revive.

Rifkin is looking for clinical trials to enroll me in for pomalidomide. Based on my research there are trials still recruiting participants, provided I met the eligibility requirements. He thinks it will be easier to get in a pomalidomide trial as opposed to carfilzomib. Still an issue around how hard the drug will be on my white/red counts and platelets. He continues to be very concerned re allowing the bone marrow to recover. Stability in the IGGs also continues. New numbers are 3430, down from 3500, down from 4500 about 3 or 4 weeks ago.

After living in Denver for 30 years, I finally got my first juror summons. Now, there was a time I would do just about anything to be able to sit on a jury. Talked about it with Dr. Rifkin and he said, no go. Too many issues regarding my abillity sit for more than a couple of hours due to my back issues, the need to check my blood chemistry every Monday, and the possibility of transfusions, or testing during the week. I used to pick juries and now I can't even sit on one! How low can one go? Oh well, the odds of my staying on a jury would be quite low anyway.

Susan and I celebrate our 27th anniversary tomorrow. Anyone who reads this blog knows my feelings for her and my deep appreciation for how she has cared for me during the last 4 years. She is special and we work so well together. She rants about this and that (she is a New Yorker after all) and I laugh. Whatever works, right?

I think one or more of my drugs must be kicking in. Maybe I'll get some sleep tonight. Later.
Dan

Carfilzomib or Pomalidomide Anyone?

2009-08-10T16:47:00.008-06:00

Monday means a visit with Dr. Rifkin. White count/red count/platelets all are OK (for me, not the general population). No shots or transfusions this week. Latest IGGs are 3500; M protein is 2.9. Continuing the slow downward drift (IGGs were above 4500 about 3 weeks ago). It feels like things are calming down. I will have a bone density scan this week to see what this nastiness has done to my bones these past several months. I had this test about 3 years ago so we have some baseline to compare it to. Previous scan was quite good, given my 15 compression fractures and broken rib. I'll probably also be started on zometa, a bone hardener. I was on that about 2 or 3 years ago also. It just means longer clinic visits to get the IV dripped into my veins.

As of the meeting today with Rifkin we had not heard from Barlogie, but Rifkin finally emailed him during my visit today and Dr. B replied instantly. He suggested Rifkin look at putting me on one of two new drugs: carfilzomib or pomalidomide. (Does this mean he's no longer trying to blast the MM out of me? Can you hear my sigh of relief?) I know about both of these drugs and have been following their development and clinical trials for a couple of years. Carfilzomib is a proteanase inhibitor, like velcade. Pomalidomide is a derivative of thalidomide. I don't think they are FDA approved yet, only in clinical trials, so I'm wondering how I'll get them or whether I need to enroll in the trials. As I started obsessing on this Susan told me to calm down as she is confident with Barlogie and Rifkin as my docs, they'll find a way to get me the drugs I need. Results from the trials are encouraging, especially carfilzomib for people like me who have had a lot of treatment. Both seem to have some depressive effect on the white and red cell counts so I'm wondering what that means in light of my poorly functioning bone marrow. Until Rifkin determines which way to go I'll stay on the steroids I guess. I feel worn out with them, primarily with this every other day stuff. I was up until 3 a.m. last night. But the blood counts seem to have stabilized and I'll have to admit that a few months ago I wasn't so sure where this was going. (Not that I have any idea now). We're not out of the woods, but we've managed to stay in this holding pattern. In addition to the same old fatigue/neuropathy/back issues, I'm now taking a drug specifically to reduce iron from too many transfusions (X-Jade). This wreaks havoc with my GI tract, as is typical with most drugs I take, it seems.

I invite you medically knowledgeable bloggers to tell me what you know about carfilzomib or pomalidomide. Best to you all. Have a good week.
Dan

Stable

2009-08-03T21:12:00.003-06:00

The visit with Dr. Rifkin today was good, only in that it didn't bring any bad news. The prednisone seems to be helping a bit in keeping the white cells and red cells above critical levels. So, no neupogyn shots and no transfusions this week. Platelets are at 97 (normal being 150). They plummeted to 10 when I first arrived in Denver in May. IGGs have moved from 4500, to 4300, to 4000, to 3850. No significant movement, but holding steady in a downward fashion, which is better than the other way. Rifkin thinks we might see a bit more downward movement in the IGGs in the next 2 to 4 weeks while on the steroids. Then, depending on how I'm doing, he may start me on some thalidomide to see if we can hit those cancer levels. Slow and steady. After 3 weeks on the steroids I can already feel the "muscle wasting effect." The little bit of strength I regained in physical therapy is quickly evaporating. Frustrating. My energy levels are also dropping as I ride the ups and downs of one day on, one day off with the steroids. And then there is the weight gain. Which is good, except that the weight gain is unmanageable. Last go round I put on 50 pounds! And Susan told me I look so good at 170. Oh well, luckily I didn't throw out any of those XXL sizes I bought 3 years ago.

So far no contact from my doctor in Little Rock, despite numerous requests for a phone consult with Rifkin. Go figure. I'll withhold further comment for now.

Have a good week everyone. We're still tickin' along, one foot in front of the other, one day at a time.
Dan

Lab Rat

2009-07-30T21:06:00.003-06:00

After 2 weeks of steroids the white and red cells seem to be holding. The stability may be illusory, but it keeps me from getting a shot or a transfusion, and may allow more therapy, such as thalidomide. Will know more on Monday. Received an email from Arkansas today saying Barlogie just received a letter from Rifkin and Dr. B doesn't agree with Dr. R. My short response to the nurse was to the effect of, "Have Dr. B call Dr. R and talk about this." Duh! Am I supposed to get in middle of this? Based on my knowledge of biology, hematology, oncology, pharmacology, and medicine, I shouldn't be in the same room with these docs. It seems I've gotten myself smack dab in the middle of the debate between blast it out of existence and manage the disease. That being said, I do know that I won't get in the line of fire of any treatment loaded with high dose chemo. After 4 1/2 years, "blast it" has not worked at all with my cells. (both unsuccesful transplants were preceded by high dose chemo regimes.) "This should prove to be very interesting," said the lab rat.

Dan

Inside Looking Out

2009-07-20T14:57:00.007-06:00

I think I'll start from the beginning. That is, when I first considered going to Arkansas for treatment. Many of you were with me in those early postings last November and December. In brief, my maintenance treatment here was no longer working. Rifkin had not articulated a definitive treatment plan. And quite frankly, I was encouraged by my meetings with Barlogie that he might get me into remission (I was, after all, "low risk", according to his testing). Almost 4 years of treatment made us all want to believe this nightmare might be brought to an end. Well, 2 months delay in getting treatment (again, Barlogie thought it better for introduction of his protocol that I not be in the middle of a treatment regime), and my cancer levels jumped from a stable 10%--12% to 90%. Change of plans, hit me with everything in the cupboard. Spare no cell in my body from the assault.

And herein lies the great divide between the Arkansas treatment plan and that used by Rifkin, Mayo, and a number of other cancer centers. Blast it out of existence vs. manage it with a combination of drugs. Each has its risks. Neither is a "cure". Being in remission does not equal being cured. Managing the disease is not remission. No one has the answer. As you all know the "blast it out of existence" approach didn't work for me. Instead I now bear the scars of that unsuccessful approach, which is marginally functional bone marrow, completely numb feet, and skin that flakes off like dandruff. And those scars (primarily the injured bone marrow) now impede my ability to withstand even the mildest of treatments. I am not one to look back and live with regrets. I made my decision with as much info as I could ingest. I know that had I stayed in Denver for treatment that course may not have been successful either, and I might now be shuffling off to Little Rock for treatment. That being said, I must admit I am extremely frustrated that my Arkansas treatment regime has left me in a state where I can currently receive minimal treatment for a disease that is "angry", as both my doctors say. As a former trial lawyer, it feels like I've just gone through a "bet the company" piece of litigation, and haven't fared very well. I always counseled my clients against taking things to the brink--too risky and they needed to be able to afford losing it all. And I must say that I never appreciated that the super beam plus chemo along with the transplant was an "all-in" bet, that might leave me with no more chips to bet. I even specifically asked whether the super beam plus chemo would prevent me receiving a transplant in the future (whether from my own cells or my brothers'). The answer: absolutely not! hmmmmm. So, you ask, what's my point, other than venting? I'm not sure, except to say, sometimes learning the lesson, once again, that we can't see into the future can be very frustrating and difficult.

So, on to the current numbers and the plan. Plasma cells (which are the cancerous ones generated by myeloma) are at 75%. They were 50% when we left Arkansas. They were at 90% or higher before the transplant. The disease is still "angry" according to Rifkin. More info on things such as "flow", that I don't really understand, will be available next week. The plan? Rifkin told me there were 2 courses of action: blast it or go at it with more finesse. Blasting it, per Rifkin, would likely leave me with bone marrow that will never recover. He didn't recommend that course but said that is undoubtedly what would happen if I were in Arkansas. (My marrow is slowly recovering. This is the first time since I returned to Denver that I have not needed a blood transfusion within 2 weeks of my last one. The white count is now 2.0, having received a neupogyn shot last Monday. Slow progress---but progress) Back to Rifkin: I didn't even consider the "blast" given the difficulties I have had since receiving the high dose chemo in early April. He says he does not want to give me any mylosuppresants, i.e., drugs that might potentially suppress the myeloma, as those drugs would also adversely affect my white and red cell counts. So I'm starting a regime of prednisone, 50 mg., every other day. Roid rage anyone? If this holds the myeloma or brings the numbers down, then he will introduce another drug (perhaps thalidomide). If that works to some degree, and my white/red counts are stable, then perhaps another drug, and so on.

The watchword is patience. Whether it takes 6 months, a year, or two years, I am confident the cancer will begin to lose its anger (no one or no thing can stay mad forever--it is a law of nature), the counts will stabilize and new treatments will begin to surface. Susan and I have been through this before. We have tapped our inner resources like never before. We know that is the source of the strength to weather this storm. Susan has been the most unbelievable pillar of support for me and she continues to show that behind those tears that constantly flow is a block of granite so solid that no storm could crack it. Similarly, Catherine and Julia are worried but steadfast in their resolve to help us through this. Catherine told me she is very frustrated with that cancer and is going to have to have a stern talk with it. Go get 'em Cate!

As we walked out of the cancer center I looked at Suz and she at me. We could see the love we have for one another in each other's eyes. We're more in love than ever. Funny how life's most difficult moments also bring blessings. And though we have to walk this difficult path, it is a long road but we're gonna make it.

Much love to all of you.
Dan

Digging for Bone Marrow

2009-07-15T03:25:00.004-06:00

Monday was the day for the bone marrow biopsy, to be conducted by none other than Dr. Rifkin himself. It's usually done by a medical technician. I'm not sure why I got such special attention. Having been through a biopsy without anesthesia, of course I requested it (IV fentanyl and verced). Then, I forgot that I wasn't supposed to eat for 6 hours before the procedure. Not wanting to vomit all over the examining room, I confessed my sin and was promptly told that there would be no sedation given. All I would get would be an ativan to relax me. Ativan is not a pain killer. So be it. I could've rescheduled, but I want to know what's going on in my bone marrow and I knew the pain would be temporary. Rifkin was quite good at the procedure, i.e., it didn't hurt that much, even though he had great difficulty getting a core of the hip bone as it is too soft from all the treatment I've received. My ability to withstand the procedure without anesthesia is either due to the 12 bone marrows that I had down in Arkansas that prepped me for this experience, Dr. Rifkin's good steady hands, or the fact that my nerves are shot and I can't feel anything anymore. We'll get the results next Monday.

Otherwise not much has changed in my blood work. I can't seem to generate either white cells or red cells on a consistent basis. I'm hoping the bone marrow biopsy will shed some light on the cause of this problem, but I'm not sure it will. It may just be a matter of time.

Otherwise things are pretty slow around here. I spend too much time at doctor's offices. I am noticing a return of some energy which is encouraging. You all know the drill: slam me to the floor with chemo, watch me struggle to get upright, regain some weight and muscle and start feeling better, then slam me with more chemo. I certainly prefer to be in the strength gathering and weight gaining phase, which is where I am now. I try not to think about what's coming. One can actually paste together a life while riding this roller coaster, albeit not too active, but nonetheless a life, as long as one keeps his eyes looking upward. Speaking of which, I must emphasize again how much I am enjoying being back in Colorado. The summer weather here is so temperate and beautiful. And the skies are always a deep blue with a few scattered clouds (except for the afternoon shower). Every day I am thankful to be back home. Why, I hardly think about Arkansas anymore (and that's a very good thing).

My best to all.
Dan

Wishing For Some Control

2009-07-07T12:40:00.002-06:00

One of the difficult aspects of this, and many diseases, is the feeling of powerlessness. What can I do to improve my situation, short of following doctor's orders? The western medical approach is: not much, try some exercise and eat balanced meals. I find myself searching for more avenues that might aid me in my body's efforts to heal. More on that later. First, the status report: IGGs back up to 4020 and M spike at 3.3. Given all the bouncing around, this is considered stable. White count is at 2.0, after getting neupogyn a week ago, and hematocrit is 23.5, hemoglobin 8.2. Those last 2 numbers require another transfusion--2 weeks after the last transfusion, which I'm headed for in about 30 minutes. So, Rifkin says my bone marrow seems stuck and we'll need to take a look at the bone marrow--bone marrow biopsy next Monday. This stuck bone marrow is of most concern as any significant treatment will likely require some level of functioning by my bone marrow in order to allow me some ability to recover from the treatments.

I started some acupuncture about 3 weeks ago to try to get some relief for my peripheral neuropathies in my feet--shooting pains and numbness. Not much success on that front. I saw a Chinese herbalist this morning for my thrush. He seems to have the greatest knowledge of where my imbalances lie and what I can do diet wise to try to restore balance. I had a very interesting discussion with him about my body's energy, the imbalances that are making it difficult for the bone marrow to recover and what can be done about it. This is also at the core of the thrush or coating on my tongue. As he said, it is but a symptom of the imbalance in the body. Now, I have been taking some concentrated vegetable soup from a Dr. in the UK, upon recommendation of a close friend who has had some success with this guy's product. He requires, as part of his regime, that I abstain from eating any meat or fish.

The Chinese doctor, on the other hand, counseled against a strict vegetarian diet because of my low red cell count. He said the best source of nutrients to aid in the production of red cells is red meat. Makes sense right? He provided a number of dietary recommendations along with some herbal tea to address the imbalances. He also counseled against acupuncture at this time because of my low white cell count--don't want to risk an infection. I had actually been reading about that risk, along with some other literature that said acupuncture may not be beneficial if you have a low white count. Rifkin knows of my trying acupuncture but had no opinions. Trying to exercise some control requires the balancing of conflicting opinions. And maybe it is all for naught. But I have to feel like I am trying to help myself so I proceed and try to do what makes most sense. Could it be that no one knows? It often seems that east and west will never meet and they go their very separate and disparate ways in efforts to treat disease. And the patient is caught in the middle.

And with that I will close. I am always thankful for everyone's support and continue to see this as a journey, no matter how difficult it may seem at any one point.
With much love and continued hope,
Dan

Bouncing Around (With Addendum)

2009-06-29T14:59:00.007-06:00

My numbers continue to move around. First, the bone marrow results: 10 days ago the IGGs dropped from 3860 to 3580, and the M spike went from 3.4 to 3.0, giving me some false hope that maybe the cancer was on a downswing. Then the IGGs jumped last week to 4370, M spike 3.4. We're hoping the numbers continue to bounce. The good news is that for the first time since I returned home, I managed to go a week and keep my white count above 2.0 (it's 2.2). Below 2.0 is the standard benchmark for getting a growth factor shot (neupogyn). So, the bone marrow is doing some work and Rifkin has optimism it will continue to improve. Similarly, platelets are holding and actually going up--now up to 67, still a far cry from the normal of 150, but also a good improvement over the below 20 readings I was getting a month ago. Red cells are holding also; haven't had a transfusion in 10 days, which is good, since my iron is highly elevated due to all the transfusions I've had (apparently the body often holds onto iron as a result of many transfusions). Thus, I get a new drug to offset that!

So where do we go from here? Rifkin said that data just came in showing a combination of thalidomide, at low dose (50 mg every other day) and predisone (also 50 mg every other day) works very well for maintenace therapy. We will be starting this in the new future. Thalidomide is a good drug for now because it doesn't affect the blood counts. Thalidomide and dexamethasone (steroid) were my first line of therapy more than 4 years ago and I responded very well, although the dosage was 200 mg, not 50. But Rifkin says 200 mg isn't used any more because of the side effects. Anyway, more treatment is around the corner. Let's all cross our fingers in a collective prayer/wish for this regime to rein in these IGGs and bring these cancer levels down.

For those of you who don't care to follow these numbers, here is my narrative: I feel a lot better than when I first returned home, although my energy still fluctuates quite a bit, and most evenings I'm pretty wiped out. I rode my bike about 8 to 10 miles on Saturday and I think I'm still recovering! In February John Sadwith called me in Little Rock and asked if I would be home by June 21, as he wanted to get us tickets to see Eric Clapton and Steve Windwood. Well, Susan, the girls and I joined John and other friends of his in a suite at the Pepsi Center for some rockin and rollin on June 21. It certainly reminded me of some good times in my wasted youth!

I'm trying acupuncture for my neuropathies but so far no response (only 2 treatments), and I still have thrush so I'm going to turn to the Chinese herbalist recommended by a friend. I've been on gentian violet for the thrush (made from the blossom of the gentian plant)--a home remedy recommended by someone. It took care of most of the thrush but can't seem to eradicate it.

Despite it all Susan and the girls remain in good spirits and won't let me engage in any self pity. I can't say things are back to normal, but life does go on. Our best to all. Have a Happy 4th of July.
Dan

Addendum: Since this posting, new IGGs are at 3720, down 650 from 5 days ago. All this bouncing around only means, at best, my cancer levels are relatively stable.

Coaxing the Bone Marrow

2009-06-15T14:55:00.003-06:00

The progress is slow, but at least it's progress. My white count seems to hold for about a week, then it drops below 2.0 (normal being 3.0 to 10.0), and I need another growth factor shot (neupogyn). When I first arrived in Denver I was getting 2 to 3 shots a week. Similarly, the red cells seem to hold for about 2 weeks following a transfusion, then drop. Platelets haven't moved downward in awhile, although they are still a long way from normal ( 58, when normal is 150 to 300). The myeloma markers are bouncing a bit. Last week they dropped to 3660, then up to 3990 and today's report shows them at 3760. Rifkin is hoping they continue to bounce, thereby signalling some sort of plateau and giving my bone marrow more time to heal. Another bone marrow biopsy is around the corner, which will give us a better sense of what levels of cancer we're dealing with and may dictate what course of action we take.

This is tricky stuff. I tried to get some answers today from Rifkin about what the next course might be, but he was noncommital--depends on too many variables. But I did learn this much: He is hoping that a new drug HSP-90 gets approved soon as he thinks its clinical trials showed very good responses. The trials are closed but he doesn't know where this drug in the approval process. He also said he cannot hit me with too harsh a chemo as he fears my bone marrow would never recover. Another transplant is likely in the works (mini allo, i.e., from one of my brothers), but it's too soon to know when that might occur. I need more time to recover and as long as my cancer levels aren't too worrisome, he will continue to keep me off the chemo drugs and steroids.

The body rash is gone and the thrush has diminished but it is a bear to get rid of. The most effective treatment (after more than $100 for 3 different medications) is papaya lozenges, which were suggested by my dermatologist. I'm still looking for the treatment to drive this stuff out of my mouth so I can taste food again.

So I try to go on with a life. I have more energy than a month ago, am going to physical therapy and riding my bike quite regularly; not far but it at least gets the parts moving. (that's my "parts", not the bike's!), and I try not to think about what lies ahead. A mental challenge to say the least. I continue to be very glad to be home. Seeing friends and just getting out to some familiar haunts occasionally is good for my soul. I continue to believe we will navigate these waters as well, especially with all of your help.

I continue to be very grateful for everything we have received these past 4 1/2 years. The blessings have been bountiful.
Love to all,
Dan

Status After A Month Back in Denver

2009-06-07T12:50:00.005-06:00

First, picking up where the last posting left off--the bike ride. Prior to embarking on the Little Rock aggressive chemo regime, I was able to ski for 4 hours, or ride my bike 15 or more miles, or swim a mile. The bike ride last week, a mere 2 miles, just about did me in. Not enough, however, to stop me from doing it again the next day, which further leveled me. Today, however, the 2 miles were easier. Strength is gradually returning thanks to physical therapy twice a week. I've also gained 6 pounds in the last 10 days or so--although I lost 5 pounds in the first week back, so I'm a net + 1 pound since returning home. The appetite is improving, although the taste buds are still impaired from the thrush I have had for the past 6 weeks. That also is improving but quite resistant--I'm on my 3rd medication. And then there's the rash, which appears to be history. At first it was thought to be graft host disease, but given the rapid improvement once I started administering a steroid ointment, the thought now is that it was my body's reaction to the thrush, an "oh my god, what is happening to me now" kind of reaction, as explained by my dermatologist. Never heard of that before.

And now the "numbers" report. Myeloma markers (IGGs) jumped from 3800 to 4200 early last week, which caused me much concern, given that my white and red cell counts, as well as my platelets have not yet returned to normal or stabilized. Dr. Rifkin was about to start me on some steroids to try to contain the upward movement of the myeloma, but decided to wait to give me a few more days to continue to "heal", as he put it. Then I get new myeloma numbers: IGGs drop to 3660. Go figure. No treatment and numbers are going down--contrary to the trend over the past month? I didn't believe it, and emailed Arkansas and requested that they ask the lab to verify that number. Six hours later I'm told the lab says the IGG number is correct. I don't know whether we are on a downward trend or just bouncing around, as can happen. The next week or so will tell the tale I guess.

I should note that 2 days before the blood was drawn which resulted in the lower IGG number I started drinking a concentrated vegetable potion that a close friend sent to me. She has been trying to get me to take this for a couple of years, but I have resisted primarily because I didn't know whether it would interfere with the chemo I was taking. Now that I'm chemo free I thought I would give it a try. I would be surprised if some change in IGGs could result from just 2 days of ingesting this new potion. I will, nevertheless, continue to take it as long as I am not on any chemo.

The adjustment to being back home has not been as easy as I expected, but is getting better. The first couple of weeks we were so wiped out we could hardly do much. Then we got the news that my blood counts were not recovering. Then we got hit with a major flood in Julia's room (in the basement) from a heavy spring rain--the third year in a row, despite having hired people each to fix the problem. New contractor has now deposited big piles of dirt on our front lawn as he digs around the foundation to locate the problem. Meanwhile Julia is displaced from her room once again. But, after a month we are returning to some semblance of a life. Susan is pulling out the depression that we both suffered as a result of the lengthy stay in Little Rock with little progress in terms of eradicating this myeloma. I've got more energy and hope that my blood counts stabilize in the next couple of weeks so we can develop strategy for getting back at this myeloma. In the meantime I have tried to get more involved in the trial lawyer's work as I am still the president, even though I've not done much for the association in the past 6 months. In addition, I continue to do what I can to regain my strength. I desperately would love to return to my swimming but I'm sure I won't be allowed in the pool until the white cells have been normal for a few weeks or more.

So that's the scoop for now. Hope you are all enjoying the beginning of summer as much as I am.

Dan