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Thank you Dan. I am at Day +313 so it it interesting to hear your situation. Where do you think we are at in the grand scheme? I have quite a few studies that paint a not so good picture following relapse after a SCT. I relapsed for about a month before the Vidaza brought my counts back to normal. I get the idea that we are at the mercy of how long the Vidaza is effective. I'm not sure if the "cure" is still in the picture? It is my impression that it would be a real longshot (the cure) at this time.
I have had very minor (a couple of weeks of rash, Day 80) GVHD of the skin and that is all. My problem mostly is that I am tired, but still functional most of the time. I sleep about 10-11 hrs. and often take 2 hour naps. I would not have a problem if my health stabilized at this level. My medications are at the lowest level since SCT. I am taking Acyclovir, posaconazole, sprycel and Sulfamethoxazole-Trimethoprim. I went golfing today, but walking the six mile course is out of the picture so I spend much of the time riding in the golf cart.
What does your doctor say about the Vidaza? Are we on it the rest of our lives?
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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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