Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Margot, my thanks also for posting " Outcome of four patients with chronic myeloid leukemia after imatinib mesylate discontinuation. " As some of you know, I have been cycling off and on IM for about 2.5 years because my own take on the way the CML (and IM) works suggests this should not increase my risk of developing drug resistance; it might actually enhance killing of the IM-insensitive quiescent CML stem cells; it may obviate or at least defer the onset of long-term adverse effects of IM (not that there's any evidence these to date);.... and it feels great to get a break from the side effects! Since I started doing this my qPCR has gone from 0.03 to undetectable (albeit with one blip of detectable again this past winter; now PCRU again), so for me anyway, it seems to be doing fine so far. In any case, it's vindicating to learn that others have tried the same approach without adverse outcomes. On the other hand, I would never recommend this course of action to others unless they were experiencing intolerable side effects. I'm happy to experiment on myself, but not on others - and although I remain sufficiently confident in my logic that I'm personally willing to act on it, I'm perfectly aware that there it goes against conventional wisdom and that there's not nearly sufficient evidence to support this regimen in general CML treatment. Moreover, I would strongly recommend AGAINST it in anyone who hasn't already achieved a 3 log reduction in qPCR. Such folks probably have Phillies aboard which are not just IM-insensitive quiescent stem cells. I don't know what sort of cells they are, but it's possible that in some patients they may include cells with partial IM resistance, which could then multiply rapidly during IM holidays. Warm wishes to all, R > Outcome of four patients with chronic myeloid leukemia after imatinib > mesylate discontinuation & #65279; > Serena Merante, Ester Orlandi, Paolo Bernasconi, Silvia Calatroni, > Marina Boni, Lazzarino > > & #65279;Division of Hematology, IRCCS Policlinico San Matteo, University of > Pavia, Viale Golgi 19, 27100 Pavia, Italy > > Abstract > > & #65279;Imatinib mesylate (IM) therapy is effective in patients with chronic > myeloid leukemia (CML). However, whether it should be discontinued in > patients who achieve sustained molecular response is debated. We > describe 4 patients with undetectable levels of BCR-ABL transcripts > in whom IM therapy was discontinued. Two patients relapsed after 7 > and 10 months and promptly responded after restarting therapy; 2 > patients are off therapy at the last follow-up visit after 14 and 15 > months and are still in complete molecular remission. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Hi , I have to tell you that I too cycle. Of course I do not have the knowledge that you do. But for some reason I have always had this inner voice telling me just what you stated below. Possible long term side affects...Building resistance...Killing the cells, etc. I started this only about 2 years ago. My first 2 years I missed dose only here and there. I have never told this to anyone... not even my Onc. But I'm off about 5 days a month...My breaks are about every 3 1/2 to 4 weeks apart. In the last 2 years, I had 2 little scares too with a positive PCR but went right back to zero. So I also feel comfortable with my decision. Albeit that the PCR positives could have been within a few weeks after my break. I will have to pay more attention to the timing, next time. I don't think I would do it if I have not been at zero for so long. And I would never tell anyone else to do it. My side affects are just about all gone now. It seems that over time our body must get use to the drug and not react. I still have the puffy eyes but rather than take the water pills I will stick to drinking more water. I have added magnesium, calcium and potassium supplements to my diet about 4 months ago and I started an exercise regime of my own. I also try stretching as much as possible for the spasms. So far, so good. I am down pant sizes (but I lost no weight?) My energy level has been unbelievable and my attention span has also been great. I am glad to hear your doing well and as always thank you for your post. They're very informative. M Tampa Fl Message: 2 Date: Thu, 07 Jul 2005 17:34:46 -0400 From: rrockef1 <rrockef1@...> Subject: IM cycling Margot, my thanks also for posting " Outcome of four patients with chronic myeloid leukemia after imatinib mesylate discontinuation. " As some of you know, I have been cycling off and on IM for about 2.5 years because my own take on the way the CML (and IM) works suggests this should not increase my risk of developing drug resistance; it might actually enhance killing of the IM-insensitive quiescent CML stem cells; it may obviate or at least defer the onset of long-term adverse effects of IM (not that there's any evidence these to date);.... and it feels great to get a break from the side effects! Since I started doing this my qPCR has gone from 0.03 to undetectable (albeit with one blip of detectable again this past winter; now PCRU again), so for me anyway, it seems to be doing fine so far. In any case, it's vindicating to learn that others have tried the same approach without adverse outcomes. On the other hand, I would never recommend this course of action to others unless they were experiencing intolerable side effects. I'm happy to experiment on myself, but not on others - and although I remain sufficiently confident in my logic that I'm personally willing to act on it, I'm perfectly aware that there it goes against conventional wisdom and that there's not nearly sufficient evidence to support this regimen in general CML treatment. Moreover, I would strongly recommend AGAINST it in anyone who hasn't already achieved a 3 log reduction in qPCR. Such folks probably have Phillies aboard which are not just IM-insensitive quiescent stem cells. I don't know what sort of cells they are, but it's possible that in some patients they may include cells with partial IM resistance, which could then multiply rapidly during IM holidays. Warm wishes to all, R Quote Link to comment Share on other sites More sharing options...
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