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Old Sat Sep 10, 2016, 12:19 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
The chimerism went from 100% donor to around 50% - dysplastic cells and blasts 4% also showed up. My disease was also associated with painful hive like skin nodules (Sweets Syndrome?) - they went away after the transplant, but came back with a vengeance. My blood counts also started dropping fast (last Hgb was 5.2, platelets 10 - WBC equally alarming, but the chemo probably had something to do with how low those counts were). They did not find any genetic abnormalities. I have another BMB coming up and it will be interesting to see if there has been any changes. The skin nodules are much improved - maybe from the AZA and Veneteclex - but not so much to think another transplant can be avoided. There is still a slight hope the drugs will have worked better than we think - but the chance of avoiding another transplant is pretty low - but not zero.

It all started with chimerism dropping to 85% and .09% blasts showing up - at that point we hoped it was just an anomaly - next BMB and CBC unfortunately was much worse.

Your relapse seems really unusual - its great you're doing so well. I found AZA fairly difficult - a lot of pain and fatigue. Fatigure might have been from low HgB - but the pain was around the injection sites and other muscles and joints.

Stay well!

p
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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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