Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Hi , So glad you posted your message! I'm very glad to hear that you remain PCRU after 5 months off Gleevec. Wow! That's so encouraging for many of us. I can only begin to imagine how lovely it is to be free of side effects. Wishing you the very best and continued PCRU!! Thanks, again, for posting! JoAnn > > I don't post on this site very often any longer, but thought I'd better add my comments to this thread. > > I've been off Gleevec five months (since April 9), my idea, not on any official trial but with my oncologist's blessing (Dr. Neil Shah, considered a CML expert). You might call it a clinical trial of one. We had discussed me doing this for at least a year; I was encouraged by the results of the STIM trial in France, where the best results were achieved for those who had previously been on Interferon, as I had. I was diagnosed in June, 2000; was on Interferon through November; started Gleevec 400 mg in the expanded clinical trial at Stanford in December; reached CCR in May, 2001 (#66 on Zavie's list); was PCRU in July, 2001, but lost it when I had to discontinue Gleevec because of elevated LFTs. Resumed Gleevec in May, 2002, and was again PCRU in September, 2002, and remain so. This was something I strongly wanted to try and Dr. Shah has told me he thinks the risks are fairly minimal. A Substantial number of patients remain PCRU more than two years after the STIM study began. The trial patients who relapsed (about half) became PCRU again when they resumed Gleevec. > > As an aside, it's been a lovely vacation from side effects. Within ten days my main complaint of constant fatigue was gone. I no longer take two naps a day, rarely have diarrhea, have no more muscle cramps and can see my eyes when I wake up in the morning. > > Best of all my persistent iron deficient anemia seems to have disappeared since I discontinued Gleevec. We're not exactly sure why yet. It came on during the past three to four years and gradually became worse and worse, down to 7.2 hgb, requiring transfusions and repeat iron infusions. It was a challenge to keep my hemoglobin over 10, but in three months without Gleevec (with no added treatment) it rose to 12.3. So far I remain PCRU. Next test October 7. > B from California > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Hi , Congratulations on you PCRU. Wow what encouraging news. Wonder if it would work as well for those of us that was never on interferon. Looking forward to your updates. can only imagine a life without side effects. Good luck and God Bless you. Anita ________________________________ > > I don't post on this site very often any longer, but thought I'd better add my comments to this thread. > > I've been off Gleevec five months (since April 9), my idea, not on any official trial but with my oncologist's blessing (Dr. Neil Shah, considered a CML expert). You might call it a clinical trial of one. We had discussed me doing this for at least a year; I was encouraged by the results of the STIM trial in France, where the best results were achieved for those who had previously been on Interferon, as I had. I was diagnosed in June, 2000; was on Interferon through November; started Gleevec 400 mg in the expanded clinical trial at Stanford in December; reached CCR in May, 2001 (#66 on Zavie's list); was PCRU in July, 2001, but lost it when I had to discontinue Gleevec because of elevated LFTs. Resumed Gleevec in May, 2002, and was again PCRU in September, 2002, and remain so. This was something I strongly wanted to try and Dr. Shah has told me he thinks the risks are fairly minimal. A Substantial number of patients remain PCRU more than two years after the STIM study began. The trial patients who relapsed (about half) became PCRU again when they resumed Gleevec. > > As an aside, it's been a lovely vacation from side effects. Within ten days my main complaint of constant fatigue was gone. I no longer take two naps a day, rarely have diarrhea, have no more muscle cramps and can see my eyes when I wake up in the morning. > > Best of all my persistent iron deficient anemia seems to have disappeared since I discontinued Gleevec. We're not exactly sure why yet. It came on during the past three to four years and gradually became worse and worse, down to 7.2 hgb, requiring transfusions and repeat iron infusions. It was a challenge to keep my hemoglobin over 10, but in three months without Gleevec (with no added treatment) it rose to 12.3. So far I remain PCRU. Next test October 7. > B from California > Quote Link to comment Share on other sites More sharing options...
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