Hello, my FIL was dxed with MDS last year, and my apologies for what I do not know because I’m trying to help my spouse figure it out at the same time, because MIL is the primary source of all things medically happening with FIL, and to make a long story short she’s off the persuasion of of we don’t talk about it it doesn’t exist/is not happening.
So far what I do know is he’s had several what MIL calls “red cell shots” which I assume is stem cell transfusions? I’m not sure if there’s a difference there. He is on the path to Bone Marrow Transplant, though recent turns of events have us kind of stumped. There’s talk of cirrhosis having developed, and he is historically anemic and so was taking iron supplements for a good chunk of time before all this started. Now, they say he has too much so they put him on Deferasirox which seems in no uncertain terms to be wrecking the sh*t out of his body. He is down over 100lb, and has been so sick in ways I can’t really mention for dignity’s sake, which it seems is a big side effect of this drug. They’ve since taken him off of it but he’s been on it for a few weeks now, and I’m not sure if that is the chemo pill they’ve been talking about or if that’s a separate drug altogether.
What brings me here: the sources that myself and my spouse have looked at all say people with this condition should not be taking Deferasirox and I am wondering, is that something that is commonly done, just with say some heavy monitoring or something?
Any help or experience you’d want to share is much appreciated and if there’s more info I can somehow obtain I’ll put in the comments.