MDS at 17 years old
Hi everyone. I’m 17 and was recently diagnosed with myelodysplastic syndrome (MDS). My bone marrow has been producing abnormal cells instead of healthy blood cells, which has caused my counts to drop a lot, I’ve been needing blood transfusions to stay feeling somewhat normal. My doctors have told me this condition was caused by my VDC/IE treatment for my Ewing Sarcoma from 2023, in 2024 I had a 12 hour robotic surgery to get it removed, it was about 12 inches in my lower abdomen, fluid filled, which chemo didn’t shrink, but the biopsy after removal came back negative for Ewing sarcoma.
At the moment I’m getting treated with azacitidine and venetoclax to try to control the disease and reduce the abnormal cells, my bone marrow showed 11% disease when I got my bone marrow transplant, this week I got a fever that would keep coming back and was admitted to the hospital for a week.
My doctors are also talking with me about a bone marrow transplant. One option being discussed is a transplant from my brother, who is about a 60% match, since the few 100% matches haven’t responded to my bone marrow team.
I got a CT done while I was admitted to get me ready for my BMT but the doctors discovered something concerning, I got a MRI right after to have some more information and it turns out there’s a cyst that’s fluid filled a small amount right inbetween my kidney and liver it’s about 1x4cm big.
Any advice or shared experiences would mean a lot. We are just so confused and lost right now, any guidance would be appreciated.