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Old Wed Mar 9, 2016, 09:35 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Kyis - I was diagnosed with MDS three years before my transplant (six months ago) - I tried Vidaza but it didn't work - We decided on transplant when I started needing frequent transfusions and had become a "professional patient." My counts were falling and blasts seemed to be increasing. It was pretty clear it was time for transplant - had Vidaza worked we probably would have waited a little longer. My blasts were as high as 8% in a bad marrow sample and around 3% in a better sample right before transplant.

Before the transplant I was told blasts below 10% are associated with better transplant outcomes - so getting your blasts lower seems prudent - hopefully you will respond to the Vidaza.

There are different transplant techniques doctors use to avoid and/or manage GVHD - I think its most important to find a very experienced doctor at an excellent transplant center - that you trust and can communicate with easily. You can ask the doctor(s) what they will do and why. At the end of the day you'll have to rely on their expertise and experience. I had a pretty good flair of GVHD all over my skin - but it was managed and now is pretty much gone. A little GVHD is not necessarily bad as it can kill any residual cancer cells the chemo may have missed.

While treatment for MDS hasn't improved much since Vidaza - I think transplant technology has gotten significantly better over the last ten years.

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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