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DiscussionDoes anyone else have AML with ddx41 genetic mutation?
Blood Cancers & Disorders | Last Active: Feb 19 10:27am | Replies (18)Comment receiving replies
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Hi Lori - yes, we have identified a potential unrelated donor with 10/10 match. My sister was a match too, but we had of course to search for an unrelated one given germline origin of my DDX41. The HSCT is going to be an important challenge with GVHD, chimerism, NRM, etc. My doctor told me that the most common reason for the latter (NRM) is our own (normally harmless) gut bacteria. Whether any known solution to this problem - other than generic prophylactic antibiotics?
At the current stage however, the most important decision for me is whether to start the chemo treatment (venetoclax + azacitidine) now or delay given no any symptoms and good overall physical condition. Despite substantially lower levels of WBC (especially neutrophils), I don’t seem to be more vulnerable to pathogens in practice than people around me. Since I was diagnosed 10 months ago, I continue my daily work in the office, taking busy public transportations, flying long and busy flights, doing shopping, socialising and even doing sport. My life is almost BAU - other than my regular hospital visits and abnormal blood readings. However, I know a number of things may go wrong once I start the treatment - and there is no way back. I do understand that the treatment is unavoidable in order to have a chance of remission and potential longer life, but the question is when?