Possible MDS after remission from AA

[mscrzy1]

Hello! I'm so thankful to have found this forum! After almost 13 years of good blood counts from my hATG/cyclosporin/steroid treatment for Aplastic Anemia, I'm confronted with concerning cbc results again. I've read that secondary MDS is a possiblity for those of us treated with ATG for AA. Right now my counts aren't bad, but they are definitely not normal. My hemaglobin is 11.4, wbc are 2.8, rbc are 3.12, platelets are 114, and MCV is 107. I was wondering if anyone else here is experiencing secondary MDS as a result of ATG with AA. If so, did you see a slow decline with your counts or a rapid one? I guess I'm basically looking for someone to chat with about it. My hematologist has been trying to avoid a BMB for me because he knows I hate them, but it's looking like I may be looking at that soon. Boo.

[Dick S]

I didn't have AA first but my numbers are somewhat lower than yours and slowly creep downward, but I am still on the "watch and wait" list which I hate.
Are you tired most of the time? Get out of breath easily? If not, it's probably coming. I wish you well and hang in there like we do.

[mscrzy1]

Thanks for replying. Yes, I'm getting tired and out of breath a lot. I get frustrated with myself because with my AA I saw counts way lower than this and was walking around and functioning, but with just a slightly lower count right now, I'm just so tired. It may be a result of trying to keep up with an 8year old and a 6 year old, too, though. I'm definitely in a wait and see situation, too. I'm hoping that the decline is a slow one if MDS is indeed what's going on. I've read scary things about secondary MDS, so I need to just stop reading.