r/mds

Hi everyone

my mom 68 was diagnosed with MDS and we’re trying to understand the stem cell transplant process . Her doctors are currently taking a “watch and wait” approach because she has low blasts (~2%) and relatively stable counts, but she also has some concerning mutations (U2AF1, ASXL1)

We’re terrified of transplant but also scared of waiting too long, and I’d really love to hear from people who have actually been through it (or had a parent/spouse go through it).

If you or a loved one had an MDS stem cell transplant in your 60s:
• What made your team decide it was time?
• How hard was the process physically?
• How bad was GVHD
• Any regrets waiting or doing it sooner?
• If you’re comfortable sharing , how are things now?

I know everyone’s case is different, but hearing real experiences would mean a lot right now. Thank you ❤️

Hi, new to posting on reddit. I was diagnosed with very high risk mds in November 2025 and have been getting EPO shots for hemoglobin. All wbc and platelets are low. Wbc 320, platelets 50. The decitabine treatments sounds horrendous. I am 70 yrs old and I feel ok now but I was thinking about getting all my things in order and letting the disease take its course. I'm a veteran so I can get home health and then palliative/hospice care. Not really afraid to meet my maker I just don't want to suffer. I freaked out the cancer group I was in because nobody had mds and they had more opportunity for remission etc. If anyone has thought about this decision I would like some feedback. I'm in California but the death with dignity thing is definitely off the table. Thanks for taking the time to read this!

My father’s bone marrow biopsy showed 10-12% blasts, while flow cytometry showed 4.5% blasts.
Which is more accurate and why is there such a high difference?

38F Overall healthy. My routine bloodwork has always shown high MCV, at least for the last 10 years (around 100) and lately its been 102.

All other counts within normal ranges.

I feel fine. No smoker, not an alcoholic and B12 and folate within normal ranges.

Has anyone had as a first and only indicator of MDS high MCV?