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Old Fri Apr 1, 2016, 06:43 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Bailie - I have my hematologist - who managed my case until transplant - got me to the transplant doctor and also to my cardiologist - she still follows me and is totally awesome - my transplant team consisted of my transplant doctor, his PA - and several doctors, fellows and PA's who rotated every couple of weeks on the transplant unit - there was also my local hematologist who worked with my main hematologist to get me transfusions an Vidaza locally - also the team of nurses in the local infusion center who were also all wonderful. -- also the nurses and assistants on the transplant unit - who were all great - and the cardiologist at the cancer center who watched my heart through the last six months. After I was discharged I went to a transplant day hospital for about four months where I got transfusions, Ritixuin etc - I saw my doctor there as well as a special group of PA's and nurses. That was pretty much my medical "team." I feel really fortunate to have had such great people taking care of me.

At this point I see my transplant doctor or his PA - every couple of weeks and will start seeing a "survivorship" PA -- and I will likely see all of them for a while - hopefully with decreasing frequency There is some discussion of doing Vidaza as a maintenance program - and maybe Jadenu to chelate iron associated with numerous transfusions - my hematologist will be in on those decisions - and I expect to start seeing her again at some point - I also will start seeing my cardiologist at some point rather than the one at the cancer center. I haven't seen a primary care doctor since I was diagnosed.

How are you doing?
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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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