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Hello fellow tMDS!
Well you have been through the ringer for sure! (are you also on an NHL board? your name sounds familiar). My hubby is 51 and he has tMDS also from NHL treatment. He also had an auto-sct in 2008. Lot's and lot's of treatment even after that for transformed lymphoma. His MDS diagnosis is new and incidently discovered while he was on revelimid (for DLBCL). They told us that he needs a allo-sct, now while things are relatively quiet on the lymphoma front. He has not blasts, but we were told that his type of MDS and with his history, the chances of his turning into AML within a year are fairly high. We have begun the process of the allo-sct (doing all the pre testing now) he needs IVIG also (he's currently running a 101.6 fever), but have to wait until next week. The last thing he needs done is an echocardiogram. His brother is a 10 for 10 match.
Is an allo not an option for your hubby? because of the bladder cancer? How debilitated is he? I can see why you are questioning what you should do.....if his counts are going up on their own, has his energy level gotten any better? If the bladder cancer is not bothering him - maybe just having it scanned would ease you mind that it's not progressing? His lymphomas in remission correct? I trust my husbands lymphoma doctor above all else and we do what she says. do you have a good relationshp (open) with his doctors? You can ask the question (I have) what would they do in your shoes? What does your hubby want to do?
Carrie, wife to Mike
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