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Sorry to hear the news - when will you find out about the bone scan?
GVHD is a scary thing - I think in most cases its manageable or goes away - but we all know its sometimes doesn't - I'm still scared of my relatively mild GVHD never going away or getting worse - and then there is always the fear of relapse... But in my case, I was on a downward spiral and staying the course really wasn't an option - i was slowly dying anyway.
There are so many variables I think its difficult to predict who will be on the better side of the curve - Hopefully you have a doctor you can trust and talk to - or maybe a second opinion would help. Hang in there -
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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