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MDS high risk in Broken Arrow Oklahoma
I was diagnosed on May 12 with extremely high risk MDS EB2, my bad luck to have 5 abnormalities in my marrow, so my ipss-r score is very high 8+. My hematologist says I’m 6 to 8 weeks from starting the search for a donor. I’ve completed my first Vidaza cycle, it’s caused a bad dry cough.I’m also taking 4 venclexta tablets a day 4. X 100mg.
Apparently venclexta is the new gold standard with vidaza for AML.anyway, I’m 66 and retired, but Genentech is giving me the meds, saving 8-10000. Usd. I’ll follow your thread, I’m waiting another week or two..dependent on blood test results..to start cycle 2. Meanwhile it’s 4 tabs of venclexta and 56 Oz of water a day.
As a comment I’d gone to my cardiologist thinking my fatigue was stent related - and I really mean extreme fatigue ( hem was 5.2) low and behold I was immediately admitted toTulsa St Johns downtown where all the high powered hematologists are and find out I’ve got MDS. Having already turned the issue over to God, Ive decided win or fail to keep a sunny disposition.
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MDS EB2 diagnosed 5/12/20 extremely high risk completed first Vidaza cycle, ventoclex 4 x 100 mg daily ANC 0.1
Last edited by Lgvenable : Mon Jun 15, 2020 at 09:25 AM.
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