What is Chronic Myelogenous Leukemia CML
Chronic myelogenous leukemia (or CML) is a form of chronic leukemia characterized by increased production of myeloid cells in the bone marrow. It is a type of myeloproliferative di...
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Long Duration without Gleevec
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Hey all, new to the group.
I'm just curious, have any of you been off your Gleevec for an extended period of time? I'm a little concerned, I went a span of months without it due to lack of insurance and I'm back on it now - just concerned and wondering if any one has gone through this and made it out okay. Thanks, Fryaga Posted on 10/06/09, 05:10 pm |
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I know a few patients who were PCR negative and went off Gleevec, most of them relapsed. Right now, trials of going off Gleevec are going on in France and Australia and a few patients are able to sustain remission without Gleevec but many relapse. Doctors say that if relapse is to occur off Gleevec, it occurs within 6 months. I am curious to know how many months you were off Gleevec.
Thanks, Anjana wife of Royston d/x Jan 2002 400mg Gleevec PCR 4-log reduction 
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About 4 to 5 months if memory serves me correctly.
My major concern is that a family friend has been in the medical field for longer than I've been typing, and she said that with periods of time off the Gleevec the white cells can mutate and it can cause the medication to not work as well as before. My white cell count went up from about 5 - 6k to 14-15k by the time I got my insurance in order and got back on the Gleevec. It's stuck around 13k right now, but it has been decreasing over the past two months that I've been back on it...just no where near as quickly as it had before.
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Your friend is correct. If the disease is allowed to come back, there can be mutations and then Gleevec can stop working. That is why doctors recommend to continue Gleevec. If your white counts went up to 15K, it means you were out of complete cytogenetic remission and out of a complete hematological remission. So your disease did come back. I hope you are doing okay now back on the drug. Is your doctor doing any tests to see if you are in marrow remission, like a BMA or PCR? Those tests see if your marrow is in remission. If you are not in remission 3-6 months after Gleevec restart, you may want to ask your doc to do mutations testing from the blood.
Best Wishes, Anjana http://www.cmlinfo.org
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