Sounds like you're doing well. I'm glad your doc has obviously educated himself about the Gleevec protocol. A lot of us have had to help educate our docs (or find new ones) since Gleevec was first approved.
Be well, Susan L ----- Original Message ----- From: "DeeHelen" <[EMAIL PROTECTED]> To: <[EMAIL PROTECTED]> Sent: Sunday, September 12, 2004 5:43 PM Subject: [CML] Time for me to post > 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. > > Dee from Duluth > > > > > New! Sign up for local CML support group meetings in your local community at > http://cml.meetup.com > > Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com > > CML (Chronic Myelogenous Leukemia Support List) > --------------------------------- > Part Of CMLHope.Com > An International Community Of CML Patients > For more information: http://cmlhope.com > > Post Message: [EMAIL PROTECTED] > Subscribe: [EMAIL PROTECTED] > Unsubscribe: [EMAIL PROTECTED] > Change To No Mail/Web: [EMAIL PROTECTED] > Change To Digest: [EMAIL PROTECTED] > Change To Email: [EMAIL PROTECTED] > List Help: [EMAIL PROTECTED] > CML Group Web Site http://groups.yahoo.com/group/CML > > > > Yahoo! Groups Links > > > > > ------------------------ Yahoo! Groups Sponsor --------------------~--> Make a clean sweep of pop-up ads. Yahoo! Companion Toolbar. Now with Pop-Up Blocker. Get it for free! http://us.click.yahoo.com/L5YrjA/eSIIAA/yQLSAA/8zSolB/TM --------------------------------------------------------------------~-> New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/
