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Hi - I have spoken with my doctor's (also Robin Roberts) about doing Vidaza maintenance, although not recently - I think we've been waiting for my counts to get to normal and to maybe get off some of my medications -In my case I did not respond to Vidaza in the first place, so its not clear if I'd even be a candidate, of if I'd want to try it. From what I understand this is a fairly recent alternative and there is not much data as to its long term effectiveness. I think if the patient has responded to Vidaza, the argument would be stronger for trying it as maintenance. I don't think they've been doing it long enough or with enough patients for there to be too much long term data.
I understand the idea is gaining interest - and your doctor should be able talk to others who are trying it if they are not using it at his/her transplant center. Good that you are discussing it with him. I know they are studying it at Memorial Sloan Kettering in NYC - and I think also at NY Presbyterian - Weil Cornell. Not sure if is in a formal clinical trial.
Best wishes,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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