Hello all fellow CMLers, I heard about my CML diagnosis on July 2, 2002. An elevated platelet count...800,000 at my annual physical...brought me to a hematologist for further diagnosis. When my husband and I went in for an appointment a week later, I was started on 400mg. of Gleevec. I felt very fortunate to be on Gleevec as I still do! Although my oncologist/hematologist was recommended to me because he is very bright, I had my doubts. He started me on the Gleevec and told me to return in a month. By then my ANC was 0.00, which I learned later. He said that it would be better if I didn't work if I didn't have to. I thought it was so I wouldn't get as tired so I went up North to a lake and visited my daughter and son-in-law at a boys camp! Later I surmised that I probably should have been staying away from large crowds! :) He also dropped my dose to 300 mg. and had me come in for blood counts more often. This past January he raised my dosage back to 400mg. "to see if that would get my Ph chromosomes down to zero". He also was not following the protocol for the drug, and I had to talk long and hard to get a FISH test done a year after I started Gleevic. I think he is getting up to speed now as far as the protocol for testing, etc. Now, I also give him copies of the teleconferences from Novartis. I know that I can ask him anything and he doesn't get offended, but I do know that I have to be on top of all this CML info. That's were you all have come to my aide. I am so grateful that I went on the web and found this site. I would feel very isolated, otherwise. I am my physician's first patient on Gleevec and only know one other person with CML who happened to be a medical assistant at my clinic. Her doctor told her not to read on the web. Her doctor has been doing bone marrow biopsies on her from time to time. My doctor has done only one on me and that was when I was diagnosed. Does that matter for me? I am sorry that I haven't posted before, but I will try and be better about that. My last FISH test results in June 2004 were: 0.13% if 4500 nuclei had fusion of BCR and ABL signals. In previous blood specimens, the percentage of abnormal nuclei was 87.6% on 10JUL2002, 0.05% on 17 OCT2003 and 0.3% on 08MAR2004. The Mayo Clinic does not do PCR tests, apparently. Zavie, do I qualify for the Zero Club? Thank you to everyone again for the support and information I have received from this site.
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