Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 At 01:34 AM 3/18/05 +0000, you wrote: > I began taking Gleevec on >Dec. 26 of that year and thanks to the Internet I insisted on 800 mg >dosage as I had read that M.D. was now using that as the >standard dosage for all new CML patients (I now know that this dosage >is controversial, but it's working for me). I am blessed to have >experience very minor side effects except for losing my pigment and >having a HGB that continues to tank even with Arnesp shots at max >dosage. I have yet to need a transfusion, but there is definately a >slow downward trend. My WBC runs between 2.1 and 2.4. So because of >these counts I have routine CBC's every other week. At some point I >know that my dose may have to be lowered or I may have to take >a " Gleevec vacation " but I am thankful that I have been able to >tolerate the higher dose. _________________ Hi Kathie, Here is just *my thinking* that I am sharing with you. Now that you have a good molecular response to IM, maybe you don't need such a high dose. The IM is to kill the ph+ cells and there aren't many of them left. But a side effect of that high dose is the suppression of your marrow in general......and personally I would wonder how beneficial that is, and it is causing your anemia. The usual thinking is that once you have killed off most of the ph+ cells, then the marrow re-populates with normal white cells and the white count goes up.....but you still have a very suppressed white count. I know we are all different, but I have been on 800mg for about 4 years.... and my white count is usually about 5.7. With this I still have some anemia and use standard dose of Procrit (40,000 units) but only about every 10-14 days not, when I previously had a shot a week. I guess what I am saying is that I am not so sure that I would want to keep driving my counts, both red and white, so low when I already had a good response. Also, I am a Dr. Druker patient and I know he has a different philosophy about the higher doses of IM........but I have seen more people have problems with chronic low counts and the marrow not coming back that I would be concerned about that. Maybe something to think about. Hope you are enjoying Florida. Maui Nanc Quote Link to comment Share on other sites More sharing options...
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