u/Zealousideal_Wall694

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 All,

We heard back from the doctors that my dad is low risk MDS somehow even though he’s got bad mutations.

His blasts are 3 percent and only mildly low blood counts

Still yet he has ASXL-1 (two clones) and some other bad mutations like PHF6 and U2AF1. He also has IDH2 and they are putting him on IDHIFA …. But from what I read this sounds like it only works a few years at most??

Does anyone else have experience with a similar diagnosis? He is 67 so I am worried that if drugs only give him a few years of remission he may be too old for a transplant if that day comes

Trying to weigh the risk of transplant sooner rather than later in someone who is otherwise healthy

Also cost is not an issue. If insurance won’t cover transplant he fortunately can cover the cost.

Appreciate any thoughts

Hi all,

I have been trying to understand outcomes with BMT and MDS… specifically high risk MDS. I recently had another post which accidentily got deleted on this topic, but wanted to more specifically hear from people who had BMT with HIGH RISK MDS .

My dad has the following mutations

ASXL1 (c.1934dupG; p.Gly646fs)

U2AF1 (Q157P)

IDH2

PHF6

Anyone have similar high risk biology, go through a bone marrow transplant?

I’d like to know about the process start to finish. What went on, how old were you, how did you feel, and any. Implications. Where did you get the procedure done? Most important how are you now and would do it again?

Thank you 🙏

Hi all,

My dad age 67 was recently diagnosed with with MDS

He has

ASXL1 (×2)

U2AF1

IDH2

PHF6

Has anyone else had similar high risk biology at a similar age and did you have a BMT? Looking for any guidance and stories you have

Thank you