The Ibrutinib Failure Rate
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 2, Verse 5 November 21, 2013 I have just returned from yet another trip to Houston to visit with Doctor Keating and his staff to see how I was doing. I expected the results to be fine as I have been getting blood tests monthly here in Denton, in between my visits to Houston, and those tests have been pretty close to absolutely normal, the only minor issue being that my platelets, the cells that help your blood clot, are still a bit low at about 100,000 (with 150,000 or higher being the normal number). But, 100,000 is still high enough for my blood to clot ..read more
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Remission, Ibrutinib...and SciFi CARs
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 2, Verse 4 It’s been way too long since I last wrote in this journal and long-running story. When I go long periods of time without writing, it has always meant that things are going quite well, as it seems to me that there’s nothing worth writing about. But folks who read this journal but don’t have any other contact with me often don’t know whether I’ve just stopped writing, have died or maybe have left the on-line community. For this I apologize. I should let folks know when things are going well just as often as I do when they aren’t going well. But f ..read more
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Lucky Man
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 2, Verse 3 Yes, I am a lucky man. Very lucky. "Richard Fortey [author of LIFE: A Natural History of the First Four Billion Years of Life on Earth] has always found it amusing that centenarians, asked why they've survived so long, tend to credit their habits. The secret to longevity, they'll tell the local newspaper, is a glass of whiskey every day, or hard work and crossword puzzles. None ever ventures that it's a matter of genes and luck."--from The Wall Street Journal All of us are lucky. The fact that we’re writing or reading these words is, by itself ..read more
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Your Questions Answered
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 2, Verse 2 Over recent weeks and months, as I’ve gone through several rounds of testing and evaluation, I’ve been asked many questions about what’s going on and so I thought this would be a good time to answer them for all of you. 1) What ever happened to the bone marrow transplant or stem cell transplant you were getting ready for? ---When I developed the p53 mutation, which I discussed last summer, wherein I lost my tumor suppressor gene, it meant that I was going to have a markedly more difficult time with my disease. It meant that chemotherapy was unl ..read more
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The Magic Stuff Called PCI 32765
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 2, Verse 1 April 26, 2012 “…there I was, under a sheet, naked except for some surgical scrubs they’d given me, but with the pants down around my knees….” THE WAIT On Leap Day, 2012, February 29th, I was given the news that I had been accepted into the clinical trial of the new oral agent for combating chronic lymphocytic leukemia, the so-far unnamed drug that goes by the clumsy label of PCI 32765, the manufacturer’s in-house development code, I presume. I instantly assumed we’d be starting the study right away because just a couple of days before, duri ..read more
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Great News!
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 1, Verse 5 March 1, 2012 Great News I have great news from Houston tonight. Today Kathy and I found a wonderful little Mexican restaurant not too far from our hotel. We've been looking for places to eat since we got here and have found lots of neat little places but it's hard to find the kind of Mexican food we really like. But today we found a little taqueria not too far from here that has enchiladas with real red chile sauce and not chili con carne like most of the Tex-Mex places in Texas have. It's nice to know where great places to eat are. In othe ..read more
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PETs and Gorillas
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 1, Verse 4 February 29, 2012 Hello again. Today was a much better day. We started out with me getting my PET scan (Positron Emission Tomography, if I'm correct). It's a scan which combines a CT scan with a nuclear medicine scan using some sort of radioactive isotope of iodine. Apparently malignant cells are aberrantly hyperactive metabolically and gobble the stuff up faster than normal when the radioactive iodine is attached to a molecule of sugar. So they do a CT scan of my body, and then overlay that scan with a scan of the overly active parts of my ..read more
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Irony of Ironies
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 1, Verse 3 Irony of Ironies February 28th was a tough day. We got whipped one way and then the other. The day before we had gotten the news that my labs indicated the possibility that I had developed the deadly Richters Transformation form of CLL which I've previously mentioned. It happens in about 10% of all folks with chronic lymphocytic leukemia. The transplant folks mentioned that one of my lab tests indicated this possibility (specifically my LDH, lactic dehydrogenase test, which was elevated). So the next day we went to see my CLL expert doc. You ..read more
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First Update From Houston
Dave's Great Adventure
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2y ago
Dave’s Great Adventure Book 5, Chapter 1, Verse 2 First Update From Houston We had a wonderful trip to Antarctica. We were kept busy with multiple daily landings and cruising out among the wildlife and icebergs in the inflatable zodiacs that we used to go from ship to shore. We were tired from all the activities but it was worth it. Even the 5AM awakenings (which were 2AM Dallas and body time) were ultimately worth it as there was so much to see and because we had to make the most of the precious few days we had available to spend there. It was a special time. This place belongs on everyone ..read more
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Intro To My Story
Dave's Great Adventure
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3y ago
This is the story of my finding out I had an incurable and lethal form of leukemia. It starts in early 2002. I've been lucky, as I've lived more than twelve years with the disease, which is longer than the average longevity for a lot of folks. I never thought I'd live this long! This story starts out with a series of messages I sent to my family regarding my illness, before I even knew what I had. Then it goes through a lot of anguished and fearful messages as I realize what I'm dealing with. You see, my dad died of the same disease after having it for five years. These short messages start in ..read more
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