Has anyone's AA changed to MDS-preLeukemia?

[MaryAlisha]

The hematologist told us today that the BMB on 6/6 showed changes to early MDS-preleukemia. Has anyone else had this happen or can give me some info on it? She said there would be no change in our medication but this increased the urgency for our BMT. They are now down to determining which is better out of the final two possible donors. Any info would be appreciated.

Thanks.

[Ruth Cuadra]

MaryAlisha,

This happened to me. My original diagnosis was AA and I was treated with ATG. The first BMB I had after the ATG showed dysplastic cells and chromosome abnormalities. We watched and waited for several months while I was stayed on cyclosporine, while each successive BMB showed that my bone marrow was changing--and not for the better. About 18 months later, we concluded that I was likely to convert to leukemia so we proceeded with the transplant. You can read the details of my story in my profile. I think that if your sister's BMB results now show a diagnosis of MDS, it is probably wise to head toward transplant sooner rather than later.

Let me know if you have any particular questions. I'm happy to try to help.

Regards,
Ruth

[MaryAlisha]

Thank you Ruth. I'm glad to know that you are doing good after the same type of diagnosis. The dr really stressed immediate BMT when they finish determining the best donor. You give me hope that I didn't have a few minutes ago. I was really starting to get down. I try to not let myself get this way. I seem to get a momentary "depression" after each monthly visit w/ the hematologist. I think it's seeing all the sick kids w/ cancer and other blood failure disorders, etc.

I'll read your profile and thanks so much for being "here" for me.

[Ruth Cuadra]

You are most welcome, MaryAlisha. I agree that it can drag you down to see so many patients at the hospital or clinic who are struggling, but try to keep your eye on the goal of getting your sister the treatment she needs so you can all move on with your lives. It's hard to have this perspective when you're in the middle of all the worry, but I'm here to help because I have seen the light at the end of the tunnel.