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Paul, I don't know when it started. I have tried to correlate it with something, but I can't. I do know that it was different from anything I have felt before transplant. It is very subtle and is not a problem for me, just a different feeling.
I am feeling almost "normal" at this time which is difficult to say. I no longer feel like I need a nap in the afternoons. Appetite is normal. I no longer feel cold when others are feeling about right. Golfing weekly.
I'm in the middle of my last cycle of Vidaza which is interesting. The last nine months have been clear of any genetic mutations and a complete remission with 100 percent donor cells. So the big question I have is "what comes next"? In case of relapse, which wouldn't be unusual, would I start back on Vidaza? I haven't found any data that addresses the next step. I have asked my doctors, but they haven't suggested anything yet. I don't think a DLI is in the picture.
It amazes me that you are seven months post transplant. Seems to have gone by so quickly. Keep it up!!
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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