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Old Thu Jun 22, 2017, 07:13 AM
Sue&Dave Sue&Dave is offline
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Join Date: Nov 2016
Location: New York
Posts: 50
Hi Meri - I'm very glad to hear that things are progressing along for you - despite the mucositis. Dave did have the option to have a cord blood transplant, and we were even moving in that direction last spring with two cords 'reserved' when he had a subdural hematoma that required 3 separate surgeries - the last one as a result of an infection that also resulted in them removing part of his skull and leaving it off. He had a 6 month recovery from that, a couple of good months and then his MDS kicked into high gear. He has been on Vidaza since February of this year and each month he seems to get a little better. Almost all of his counts are normal now (so unusual to not see the bold "LOW"s on his lab reports!), and he hasn't needed any transfusions. So, as we have been saying he is one of the 'lucky' ones that Vidaza seems to work on - and he tolerates each round a little better each time. We'll ride the Vidaza train as long as we can and only hope that he'll get several good years out of it (I've seen posters that said they have been on it for 7 years!) That said, we are cognizant that it could stop working at any time and continue to meet with his transplant team to have a plan in place if/when the Vidaza doesn't work anymore. We are looking at a haplo-identical transplant as the new center he goes to has a great track record with them. Best to you and please keep us posted on your progress, Sue.
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