Chronic Myelogenous Leukemia (CML) Support Group

Hi: everyone I am a new CML patient, I just start my gleevec a month, lot of thing I don't understand,First my WBC is low than 450 now, my dr. want to see me another week. I was also wondering some data, before my dr. give me gleevec, she did some blood test which she called baseline data, the BCR-ABL1 is 243%,but I remember I had a blood test before the I just found my wbc was high (17), the BCR-ABL was 2.34%,(one month ago) is anybody know what is different, I asked my Dr. she seemed could tell me clearly. thank you very much

When my son was diagnosed with CML 1st thing I did was look for doctors in our area who have experience with CML. Luckily the dr. who was already treating my son had been part of a research team directly related to CML and Gleevec. One thing he stressed from the very beginning was not to miss any dosages. Once taking Gleevec and if you are off for any amount of time CML has the tendency to build a resistance to the Gleevec. For those of you who haven't had 2nd opinions please do!!!!!

Dear specialk1957, I'd like to know what your second opinion doc said about going off gleevec. Earlier studies said it ran the risk of building resistance to the drug. Many patients are reporting that their drs are temporarily taking them off gleevec for one reason or another now, so maybe the protocol has changed on this. How are you doing now? Haven't heard from you for a month. Sending good wishes to you and all our cml group members!

Hi cmlsam3, My second opinion doc took me off Gleevec because my bone marrow biopsy showed no change in the # of cancer cells within each chromosone group. I believe the chromosone's are broken down into groups of 20 and in each group, 20 of the cells were cancer cells. I just got my bloodwork after being off the Sprycel for 3 full days. My platelets went up to 29,000, my hemoglobin went up to 11.9, but my WBC is 2.18 and my neutrophils dropped to 740, which is under the 1,000 they want them at. It's just never ending for me right now. I need to have a major discussion with my doc on Friday. I just don't know the answer. I'm frustrated right now...I read where people have been on Gleevec for years and years and their blood counts are stable. I was concerned about going off Gleevec...worried that it would affect the bone marrow, but my 2nd opinion doc said there are no studies that support that. Thanks for responding to this posting. I hope things work out for you too!