tag:blogger.com,1999:blog-19102494.post1231384536752140333..comments2023-10-07T07:52:24.587-07:00Comments on CLL Diary: There's no toxin like CytoxanDavid Arensonhttp://www.blogger.com/profile/13876562687586184006noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-19102494.post-55388404923307152502009-07-21T20:17:00.579-07:002009-07-21T20:17:00.579-07:00People here are probably sick of hearing me advoca...People here are probably sick of hearing me advocate for exercise, but it's one thing you can do for yourself to help fight the disease, it's natural, and all the side-effects are good ones. Anyone can get fitter, and by so doing he gets healthier. It's that simple.<br /><br />DennyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-41587811981263523902009-07-21T11:58:20.005-07:002009-07-21T11:58:20.005-07:00We can plan intelligently until the cows come home...We can plan intelligently until the cows come home, but a lot of this comes down to luck. I believe this more and more the longer I live with CLL and the more case histories I see.<br /><br />A couple of thoughts:<br /><br />11q is not a monolith.<br /><br />There’s someone who posts to CLL Forum who also has the 11q deletion and has had it for many years. Her disease has been remarkably stable and she has not been treated. She sees Dr. John Byrd, who is in the forefront of this sort of research, and he has told her that in some cases they are finding 11q to be (my term here) “better than expected.” That doesn’t make it good, of course, but there is a spectrum, or bell curve to it. It appears that on the bad end it is indeed bad, and on the good end it is not as bad as perhaps initially thought. <br /><br />I think the question is, how has one’s 11q deletion affected the p53 pathway – do you still have some ATM (programmed cell death) functionality? ATM is located on the long arm of chromosome 11, hence the tag of 11q. (It is not present on the short or “p” arm of the chromosome.) Monoallele deletion -- which is what I have -- means the relevant bit is broken off of the long arm of one of the set of two chromosomes #11. Biallele deletion means that both of the chromosomes 11 have lost the ATM gene. It stands to reason, and appears to be born out clinically, that the monoallele deletion is the half a loaf that is better than none; how long it will stay that day, given the vagaries of clonal evolution, is anyone's guess.<br /><br />Exercise<br /><br />It’s interesting how much more energetic I have begun to feel a few days post-chemo. Losing the lymph node bulk freed my body of a lot of weight, as well as perhaps of a lot of work. I am much more nimble moving heavy boxes, running up and down stairs, doing the painting and fixing that needs to be done around here as we remodel. And I’m off the steroids, so it’s not that. I am “healthy” enough to begin to enjoy exercising again.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19102494.post-31552166705219051132009-07-21T04:41:41.874-07:002009-07-21T04:41:41.874-07:00Glad to hear the good news!Glad to hear the good news!Gratefulnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-6278145807099822862009-07-20T23:37:15.036-07:002009-07-20T23:37:15.036-07:00I found that exercise is the best anti-depressant ...I found that exercise is the best anti-depressant on the market. It is almost impossible to think of yourself as sick when you're flowing in motion, whether it be a brisk walk, or dancing, riding a bike, whatever. Lifting weights (even if only a few pounds) also tightens the muscles and affords a sense of well-being. These are mental effects, but as I've written here before, I also believe that exercise is keeping me alive and in long-term remission from an initial diagnosis, and then a relapse three years later, of stage IV CLL (the latter being ten years ago now).<br /><br />DennyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-19102494.post-6276660838315207842009-07-20T20:17:13.481-07:002009-07-20T20:17:13.481-07:00So far, you seem to be making good decisions. Tha...So far, you seem to be making good decisions. That is due to either intelligent planning, or luck.<br /><br />My 11q on the other hand was not affected by cyclophosphamide (cytoxan), nor did my lymph nodes decrease in size.<br /><br />This is a maddening disease. I feel terribly well, but my hematologist is increasingly frantic about treating me, and I guess she's right. <br /><br />I do just hate to go into another clinical trial with all of the side effects possible (including heart attacks, strokes, seizures, etc.).<br /><br />The 11q deletion carries with it a 'grim' or 'dire' prognosis. It is difficult to deal with those terms, and the median survival times. I deal with it by denying it. When you feel fine, that's easy to do, no?Anonymousnoreply@blogger.com