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Old Wed Mar 9, 2016, 04:31 PM
kyis kyis is offline
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Join Date: Jun 2013
Location: Marin, California
Posts: 56
Any other options?

Well I haven't been on the forum in a while. I have been working and trying to move forward, but looks like it is finally catching up with me after 8 years of no treatments, drugs or transfusions. In 10 mos I went from 10% blasts to 15%.
hct, hgb and rbc all have has been coming down and recently out of breath. I been hanging onto low wbc for years usually 400-800 and haven't been in hospital for over a year.
1st blood transfusion planned for This week and Vidaza starts Monday. Lower dosage because of counts and I'm hpyocellular 5-40%. I'm usually about 20% or so. I use to have perfect matches available. I hope they are still around for transplant. Pretty darn scared now that they are putting me into the game, but fear to fight, right!
So..
Could I go straight to transplant, is it that much better to get blast down still?
I couldn't find a trial near me (SF bay area)
Of course its the 5 days on, 2 off, 2 back on.
Is 5 good enough or should I just do the 5-2-2.
I find it amazing that after 20 years we still only have Vidaza, and thank god we do.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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