tag:blogger.com,1999:blog-167898042024-03-12T16:04:07.941-06:00The Scoop on DanThis blog was initially created in 2005 to track my progress through a stem cell transplant for my recently diagnosed multiple myeloma. Like so many things in life it has grown into so much more and is now a worldwide support network for me and my family as we travel the path of living with myeloma. Read or comment if you wish and welcome to our journey.dan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.comBlogger272125tag:blogger.com,1999:blog-16789804.post-45989416076232301052012-09-08T15:47:00.000-06:002012-09-08T15:47:22.606-06:00Memorial Service<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">A service for Dan will be held at 10:00 am on Tuesday,
September 11th at Mile Hi Church, 9077 W. Alameda Avenue, Lakewood, CO. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">A
scholarship has been established in Dan's name at the University of Denver
College of Law. Contributions can be sent care of Colorado Trial Lawyers
Association, 303 E. 17th Avenue, Suite 320, Denver, CO 80203. Contributions can
also be made to the Leukemia & Lymphoma Society.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Thank you all for your love and support during this time.</span><br />
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dan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com6tag:blogger.com,1999:blog-16789804.post-82135382185429068162012-09-07T08:22:00.000-06:002012-09-07T08:22:34.655-06:00Final PostDan died early this morning. His family would like to thank all of you who have followed his blog for the past 7 1/2 years. You gave him so much strength and support.dan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com13tag:blogger.com,1999:blog-16789804.post-12815883173014443342012-08-20T13:34:00.001-06:002012-08-20T13:37:51.615-06:00Deja VuTen days ago we learned that the latest chemo regime of velcade/dex is no longer working. My IGGs jumped from 4500 to 6900 and the M spike jumped to 5.0--while being treated with velcade. No more velcade. We have now moved to a regime of bendamustin, revlimid, dex, and prednisone. We'll know in about 2 to 3 weeks if this is working.<br />
<br />
The discussion with Rifkin was yet another sobering event. He again emphasized that I did not need to continue with treatment and that it would be very reasonable if I elected to forgo any further treatment and just receive palliative care. This is the 4th time I've been given this option, going back to my first visit to MDAnderson in November 2009. As with each of those previous "offers" I turned him down. But I think we all know that at some point the chemo won't work and then the decision will probably be different. There are no more new drugs; I've had them all. No more transplants as my blood would likely never recover--i.e., produce white and red cells and platelets. As it is now I need platelets every 3 to 4 days and blood every 10 days. And this is just the effects from revlimid. So we continue in this alternate reality of seeing a train coming down the tracks heading straight for us and wondering if, once again, I can jump out of the way.<br />
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And just to insure that I don't get too comfortable, my right arm decided to take a vacation, so to speak. As you know the left arm is broken and can't be treated. About 10 days ago, while pulling something from the freezer my right arm snapped and has left me unable to lift anything. I also can no longer drive. That is what we all feared when I first started having pain there about 2 months ago. What are they doing about it? Nothing. As Rifkin said, we can't do anything with the arm we know is broken, we certainly can't do anything with your right arm.<br />
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Susan and the girls are rallying in support, of course. And we continue to enjoy our lives. In fact I think we laugh more now than we ever did. What are you gonna do? We will enjoy our every minute together.<br />
<br />
Susan and I celebrated our 30th wedding anniversary this month. What a wonderful event. We are as much in love as ever and just enjoy each other's company. I have dragged her through the worst of times with this disease yet she continues to care for me and treat me like a king.<br />
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I wish I had better news to impart but, who knows, maybe I'll be able to report good news on the next post.<br />
Best to all,<br />
Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com15tag:blogger.com,1999:blog-16789804.post-26836613272519172652012-07-17T11:47:00.001-06:002012-07-17T11:47:45.570-06:00A Long Post Just to Say I'm StableMy apologies to all of you who have been waiting for an update. I am especially grateful to those of you who sent me emails asking "what's up?" I appreciate your concern. The delay was due to my waiting to have something to report. Just received the analysis of the myeloma numbers from last week and they are stable. No change from a month ago. So, once again Dr. Rifkin has found a drug combination to keep the myeloma at bey, at least for awhile. IGGs went down 100 point and are around 4400. M spike went up a touch and is 3.0, up from 2.8. I still don't produce any platelets so I'm at the hosptal every 3 days to get refilled. Red cells hold a little longer --7 to10 days. It's still way too often for both. <br />
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Two weeks ago Rifkin took me off revlimid to see if my white count would recover. It has moved upward a whopping .2 points and is now at .8 (should be above 2). But at least it's moving and in the right direction. I sense he's a bit nervous with my current chemo regime because my disease is notorious for exploding if not held in check, but my white count has been stuck at .2 for 2 months and that puts me at great risk for getting an infection. My current chemo regime is a shot of velcade (subcutaneously) once a week and every other day 50 mg of prednisone, plus a whole host of antibiotics, anti fungus, etc etc. <br />
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The best part of eliminating the revlimid is the return of some energy. I actually can accomplish a few things like running errands, going to lunch, posting on my blog (ha). I also feel more clear headed. I am also getting reacquainted with my appetite. What a pleasure that is. Not only do I have an appetite but I can actually taste the food, which has resulted in me putting on 6 pounds. Oh yeh. I no longer weight 148 lbs. I think it was the bundmustin and the heavy bactrim he had me on that did in my appetite for 3 months.<br />
<br />
The NYTimes had a series of articles about gene sequencing being the new individualized cancer treatment. Scientists have been looking at this for a number of years and it looks like they are making some tremendous progress. I won't bore all of you with the details of what this is, but if you are interested you should check out the Multiple Myeloma Research Foundation website www.themmrf.org. They are helping to run a clinical trial for newly diagnosed myeloma patients to study gene sequencing. Of course, Dr. Rifkin and I are plotting our own strategy to get my genes studied. (I am the furthest person from "newly diagnosed") <br />
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Whew. So that's the update. I continue to be amazed at the ups and downs of this disease. For some periods I am hardly capable of getting out of bed because I'm so exhausted and my bones just ache and then after a change in chemo I catch a few months where I come out of the fog, find some energy, and get a taste of life. Dr. Rifkin and I have become good friends and I feel like we both know we are in this together. I never complain (which frustrates both him and his nurses) but he seems to know when it's time to change the regime just by looking at me. He has told his staff, whatever Dan wants, give it to him (regarding appointments for labs, transfusions, and even treatment). He knows that I am fully aware of my treatment schedule and he trusts me to keep the nurses on track,, if necessary. As we shook hands after my exam yesterday I told him he was doing a great job keeping me alive. He just responded: well, I've got to figure out what we're going to do next. I'm going to email so and so, talk with_____, and I will be seeing_____ in 2 weeks so I can discuss your treatment with him. As long he as never gives up, I won't either.<br />
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And as for Susan? Let me put it in her words. When Rifkin asked her how she was doing she summed in up this way: "As Dan goes, so go I." She is worrying much less and getting out with her friends more now that I'm not staying in bed all day.<br />
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Love to all,<br />
Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com9tag:blogger.com,1999:blog-16789804.post-3170625627830435012012-05-20T18:06:00.001-06:002012-05-20T18:06:23.559-06:00Update from DenverIt's been quite a while since my last post and lots seems to have happened. First, it appears the bendamustin/revlimid continues to work as IGGs and M spike continue to move down, although a bit more slowly. Or I should say they were moving down until I got pneumonia, which took me off the chemo regime for 3 weeks. Then another week hoping that my blood counts--white cells, red cells and platelets would revive as they were significantly depressed from the 5 chemo regimes and then the high dose antibiotics. In the midst of this, my right arm starts to bother me (that's my good arm) which prompts an xray, which in turn puts me back in radiation therapy, this time for the right arm. I have the same degradation process beginning in my right arm and they want to get it before any bones break. Yeh, I'm all in favor of that. So that's where I am right now: off the chemo, getting radiation, and hoping my blood counts revive. I continue to need platelets every 4 days and red cells every 5 to 10 days. Would like for my bone marrow to become a bit more productive so I could reduce the number of transfusions. Not sure that's going to happen in the near term. But I'm happy we have the bendamustin to knock the myeloma down. Just after I got over the pneumonia Rifkin ordered me to take a vacation to a warmer climate. Catherine was home at the time and became the beneficiary of our 4 day jaunt to Scottsdale to enjoy resort living. Julia had to stay home and work. As I told her, someone's got to pay for this. Even though I did nothing, just like I do here in Denver, it was nice to be poolside and in the heat. So that's the word from Denver. Still going forward, one step at a time.<br />
Best to everyone,<br />
Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com5tag:blogger.com,1999:blog-16789804.post-47553635182673466212012-04-10T20:35:00.002-06:002012-04-10T20:58:04.822-06:00DisarmedThe bare bones facts: Iggs moved down from 4313 to 3750. A good step down and a downward move that was unexpected given the last IGGs moved up 500. So the bendamustin/revlimid regime continues to do its work.<br /><br />This good news is tempered by the visit with the orthopedic surgeon. My ability to use my left arm is still quite limited. I can't raise it higher than my waist nor can I stretch it out from my side. Although this is some improvement over the last month, it is not healing very rapidly. The ortho thinks I have probably recovered as much function as I'm going to get. He said I had 2 options. The first one depends upon me getting my myeloma into or very close to remission. I laughed at this option, after 7 years and 3 failed transplants, but still asked him to elaborate. IF I could miraculously get into remission, then I might be able to undergo surgery where they would put a plate across my shoulder and humerous. Since option 1 isn't really an option (at least for now) I am left with option number 2: live with it.<br /><br />I will admit this is depressing. I don't really have any use of this arm and was looking forward to its healing. It looks like its not to be. But then, as Susan said, it's your arm Dan, not some statistic, meaning, of course, that the odds don't seem to include people like me. So I'm going to try a bike ride soon. She just rolled her eyes with this proclamation. My sister jokingly suggested I tie my left arm to the handle bar. Right. <br /><br />Well, that's it for now. The good news on the myeloma clearly overshadows the left arm issue. I'm sure I'll adjust. As the family reminded me, "we didn't think you'd even be here a year ago, so let's not worry about this." As always, they're right.<br />Love to all,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com5tag:blogger.com,1999:blog-16789804.post-49811135840736806392012-03-23T18:49:00.001-06:002012-03-23T19:41:00.305-06:00Seven Years!Seven years ago today, on March 23, 2005, I received "the call" about my blood work. I insisted that my GP tell me on the phone what was up and it's all history now. At the time I never would have bet that I would be here seven years later, but here I am. What a journey it has been and what a remarkable group of friends you are to have hung in there with us all these years. <br /><br />The latest blood work wasn't great, as the IGGs moved upward 500 points from last month. Rifkin is not concerned as he says they are still in the same "range" and other blood work looks good. In addition he says I look good--better than 3 months ago. I feel better and have a bit more energy, although some days are still difficult. When I asked Rifkin what he would do if and when the IGGs start running out of control. His response was simply, "I'll have to cook something else up for you." I still need platelets every 4 days but my need for red cells is now stretching to about 10 days, which is also a good sign. Suz and I are still quite tired of the 3 to 4 days at the clinic/hospital but so be it, if that's what's necessary.<br /><br />My arm is out of the sling and I have some limited use of it. I feel like it will come around eventually, albeit quite slowly. <br /><br />And that's where we are seven years down the road. Best to all of you.<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com6tag:blogger.com,1999:blog-16789804.post-34832511378268305022012-03-01T10:37:00.002-07:002012-03-01T10:48:46.917-07:00Rolling AlongI finished my 3rd cycle last week and now get to enjoy 2 weeks of recovery. This first week has been a bit rough, cleaning out, but I feel like I'll have more energy by the weekend and then next week should be even better. We'll measure the progress in about 2 weeks, so no new numbers. I'm still dependent on blood transfusions and platelets, which requires me to be at the hospital at least twice a week, in addition to 2 clinic visits with Rifkin.<br /><br />My arm is healing, albeit slowly. I still can't use it but the doc says the humerous is staying in place--in the shoulder socket, so if I continue to keep it immobile, in time it will heal. That does make driving and other activities challenging, to say the least.<br /><br />I met a man at the clinic last week who was diagnosed with MM in 1999. He has been through 4 transplants and is in about the same place I am in terms of having had every drug imaginable and hoping for a new drug to appear. Gives one hope to have a companion on this journey and to know he's got 5 more years logged than I do.<br /><br />I can't wait for Spring. Although this winter has been mild, I still have cold most of the time. I told Rifkin I need a vacation where I can just lay in the sun by the pool. He said he'll work on it.<br /><br />I'll post numbers when I get them, probably in about 2 weeks or so.<br />love to all,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com7tag:blogger.com,1999:blog-16789804.post-91827168998761823732012-02-07T10:46:00.003-07:002012-02-07T11:03:45.208-07:00Resting After Cycle 2I 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.<br /><br />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.<br /><br />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.<br /><br />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.<br />Love,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com9tag:blogger.com,1999:blog-16789804.post-55551425131255059482012-01-05T19:42:00.002-07:002012-01-05T20:04:14.363-07:00A Stunning Start to 2012Received 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />We are very grateful for all your support.<br />Peace love light<br />dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com15tag:blogger.com,1999:blog-16789804.post-69436058020182564282011-12-20T17:29:00.002-07:002011-12-20T17:56:44.124-07:00I'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.<br /><br />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.<br /><br />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.<br /><br />Peace, light and love to all.<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com7tag:blogger.com,1999:blog-16789804.post-44509279806498289192011-12-03T16:38:00.003-07:002011-12-03T17:05:35.152-07:00Carfilzomib Bites the Dust<div><div>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. </div><div> </div><div>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. </div><div> </div><div>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.</div><div> </div><div>Thank you everyone for your continued support.</div><div>Love, </div><div>Dan</div></div>dan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com7tag:blogger.com,1999:blog-16789804.post-32029832913095745442011-11-06T10:31:00.003-07:002011-11-06T11:04:07.337-07:00Bone Marrow ResultsBone 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.<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com6tag:blogger.com,1999:blog-16789804.post-54815744757308324222011-10-09T17:43:00.002-06:002011-10-09T17:59:55.560-06:00Starting Cycle 2I 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.<br /><br />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.<br /><br />No news on whether carfilzomib is working. Should know by late October/early November.<br /><br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com3tag:blogger.com,1999:blog-16789804.post-18895230456093628192011-09-15T16:33:00.002-06:002011-09-15T17:10:47.062-06:00Light the Night plus Carfilzomib UpdateLIGHT THE NIGHT<br /><br />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 <br /><br /><a href="http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN" target="_blank">http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN</a><br /><br />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.<br /><br />CARFILZOMIB<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br />Love to all of you,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com2tag:blogger.com,1999:blog-16789804.post-8261049108571653712011-08-19T22:36:00.005-06:002011-08-19T23:44:03.819-06:00New York CityReturned 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.
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<br />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.
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<br />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:
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<br /><a href="http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN" target="_blank">http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN</a>
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<br />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.
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<br />I hope to see you at the walk on Sept. 22 (prewalk party at 5:30, walk starts at 7 p.m.)
<br />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.
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<br />Dan
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<br />dan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com1tag:blogger.com,1999:blog-16789804.post-12513059277500780312011-08-04T10:25:00.003-06:002011-08-04T10:40:43.075-06:00A Quick UpdateIt 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.<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com3tag:blogger.com,1999:blog-16789804.post-89607180556310127802011-07-31T21:07:00.004-06:002011-08-03T22:27:31.794-06:00CyclingUnfortunately 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.<br /><br />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.<br /><br />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: <br /><br /><a href="http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN" target="_blank">http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN</a><br /><br />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.<br /><br />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.<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com1tag:blogger.com,1999:blog-16789804.post-47651629634369105362011-07-05T10:29:00.002-06:002011-07-05T11:14:21.986-06:00The TriathleteNo, 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: <br /><div id="yui_3_2_0_3_1309883134439189"><a id="yui_3_2_0_3_1309883134439188" rel="nofollow" target="_blank" href="http://pages.teamintraining.org/nyc/nyctri11/catherine"><span class="yshortcuts" id="lw_1309883147_0">http://pages.teamintraining.org/nyc/nyctri11/catherine</span></a><br /><br />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.<br /><br />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.<br /><br />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.<br />Dan<br /></div>dan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com4tag:blogger.com,1999:blog-16789804.post-20832066042682794752011-06-18T12:50:00.002-06:002011-06-18T13:21:36.120-06:00Here We Go AgainRegime 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.<br /><br />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!).<br /><br />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.<br /><br />Best to all and Happy Fathers Day to all you Dads.<br />Love,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com3tag:blogger.com,1999:blog-16789804.post-63773051558744330942011-06-01T21:07:00.002-06:002011-06-01T21:28:02.433-06:00Diet, Drugs, and HerbsThe 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.<br /><br />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.<br /><br />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. <br />Best to all of you.<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com4tag:blogger.com,1999:blog-16789804.post-17345573987782182992011-05-26T14:13:00.002-06:002011-05-26T14:27:14.570-06:00Perhaps We're LevelingSaw 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.<br />Please have a relaxing Memorial Day.<br />Love,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com2tag:blogger.com,1999:blog-16789804.post-83674357573848887612011-05-15T21:28:00.009-06:002011-05-16T20:42:11.624-06:00The Truth Be ToldI 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.<br /><br />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.<br /><br />--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.<br /><br />--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.<br /><br />--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.<br /><br />--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.<br /><br />--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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com11tag:blogger.com,1999:blog-16789804.post-79115259366031017022011-04-29T12:08:00.002-06:002011-04-29T12:35:49.707-06:00Tough SleddingGrowing 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.<br /><br />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.<br /><br />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.<br /><br />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.<br />Love,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com6tag:blogger.com,1999:blog-16789804.post-26749636749082718032011-03-25T16:37:00.003-06:002011-03-25T17:02:42.878-06:00Danny 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Best to all,<br />Dandan pattersonhttp://www.blogger.com/profile/01422820512237999017noreply@blogger.com5