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I am so sorry to hear about your mother. I don't really have anything to offer as a suggestion, but I want you to know that people will read this and if there is something to suggest, most likely, someone will come forward. The fact that your mom came through the transplant so successfully and then to have it fail is, as you put it, is heartbreaking. Is there talk at all about giving transplant another try? Would you consider a second opinion? I know that Moffit is known for Dr. List and his work with MDS, but I wasn't aware that they did transplants. Your mom and family will be in my prayers. I hope someone can offer you more info than I could.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good 
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