MDS is a bone marrow failure disorder
MDS is a blood cancer
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  • in reply to: Almost 42 a little over a year since diagnosis #57953

    Thank you for the responses, After a few months of taking 100mg, they bumped me up to 150mg and was on that for 2 months. I didn’t notice any side effects while taking the lower dose, but had a bit of mild stomach issues on the higher dose. I was on this drug from late November until early March. I have stopped taking the Promacta because it was not helping my blood counts. Having my 3rd BMB in about a week to see if there has been any change. It has been suggested that I start on Azacitidine (Vidaza), most likely in a month or so. I am a little apprehensive to start on Vidaza as I am still leading a relatively normal life and believe that it usually has an average effective time frame of roughly 24 months. Looking at my last BMB results (from May 21). I was at less than 1% blasts and have a BCOR mutation with a 7% allele frequency (which doesn’t really seem to mean much yet). I guess we’ll see what story the next BMB tells. My main concern with the Vidaza is that it will cause problems that aren’t currently there. I know that it is considered a “low intensity” chemo drug, but it is still chemotherapy, and that comes with its own set of fun symptoms. Best case(in my head anyways), it does send me into remission after a few or 6 cycles. I’m not sure what worst case would be. I feel like I can live fairly normal life as long as no physical trauma causes my lack of platelets to shine. Chris, I can’t say that I’ve heard any Drs say that at this point, but that could be a trend.

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