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Sticking with the AG221 as long feasible sounds like a wise strategy, rar.
I totally understand yours and Baillie's reasoning, because I was in your situation in Sept 2011 and opted to go ahead with a BMT at the time as my older brother is compatible. Like you my expected life span at the time was 2 years at the outside. I felt as though I had been let out of jail when my condition improved and stabilised.
Although my WCC has continued to decrease since I was first diagnosed, I've had the time to learn how to look after myself even better and largely avoid infections. I think that it would be much more difficult for you and Baillie as it seems your platelets are a big problem, and there doesn't seem to be much info out there on how to self-manage that. MDS is so individualised isn't it.
Best wishes to you both and may God guide you as you make your decisions. Everyone on this forum will support you no matter what option you choose.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Last edited by Cheryl C : Sun May 25, 2014 at 09:00 PM.
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