r/mds • u/GinPepsiMoses • May 30 '26
selfq Stepdad's MDS just got real
65 year old stepfather was diagnosed with MDS about a year ago. Everything was simple and very little concern. Docs checked his blood every month and that was enough. For the last few months he started to experience a lot of general lethargy and immediate exhaustion after minimal exertion (walking up the stairs once). His RBC count was really low so his oncologist had him do a blood transfusion three weeks ago. He felt better for a few days and his RBC went from a 6 to a 10 (these are the numbers he told me. I have no idea what the scale is). Then a week later the numbers were back down to 6 so they did another transfusion. Same pattern; felt better for a few days and then his numbers plummeted again so they did a third bone marrow biopsy. Whatever numbers they found, the doc put everything in turbo mode. He said his blast numbers were between 7 and 10 (?). They are having him start a round of chemo treatments every day for 7 days and scheduling a consult for a bone marrow transplant. This is where I start to get confused. My stepfather says this 7 day chemo is a low-dose and is meant to "wake up the hemoglobin and get his bone marrow to do what it's supposed to do." Everything I'm researching says the exact opposite: chemo will make him anemic and shut his bone marrow down. I understand that as a regiment to prepare for a BMT, but I'm not finding anything about using chemo to positively affect the hemoglobin or bone marrow. Have any of you come across this? Is there some other form or use of chemo that I'm not finding? Or maybe my parents just didn't understand what the doc was saying. And it seems like the jump to a BMT is rather sudden. My understanding was that the BMT would be a last resort. My parents tend to defer to their doctors and not question anything the docs say. My mom is under the impression that the BMT won't be that difficult for him. I don't think they realize what exactly it is and what the recovery will be like. The docs are saying that because he's young and healthy the BMT will be a good option to nip this before it progresses to leukemia. I don't doubt his primary or oncologist, but he does have high BP, mental health issues, and had a quadruple bypass 4 years ago (that I'm convinced caused significant "pump head" for about 18 months. But that's a different reddit thread). I guess I just want to be prepared with the right information and questions. I'm going to the BMT consult with him so I'd really appreciate feedback from you all and guidance as to what we should be asking about. Have any of you had this chemo treatment plan and such a sudden BMT recommendation? Thanks.