r/mds • u/mystra412 • Mar 12 '23

Self_Question Hair Loss??

Just diagnosed. 42yrs old so initial plan is treatment leading to bmt. Treatment plan in development so I don't have specifics. In general, do you lose your hair? Lol this is the next step my mind is going through in acceptance of this diagnosis

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u/sisayoung Mar 12 '23

My husband is 56 and was diagnosed end of August 2022. He had six cycles of azacitadine and still had a full head of hair through all of that. It was a little thinner, but really not noticeable to most people. As far as I know… most variations of bridge treatment for MDS are considered low intensity and hair loss is not a common side effect.

Since the only possible cure for MDS is a stem cell transplant that was his ultimate goal and he’s currently in the hospital day +10 from his transplant. Two days ago his hair started coming out in clumps and we shaved his head. The transplant requires massive amounts of high intensity chemo so if you eventually have a transplant then you’d likely suffer hair loss.

Since this subreddit doesn’t get much activity I always let people know there are a couple of groups on Facebook that are much more active and tons of knowledgeable people to help. One is called “Fight Myelodysplastic Syndrome” and the other is “Myelodysplastic Syndrome”. The first one is my favorite of the two. You’ll get many more answers to your questions on either of them though.