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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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