[Lisa V]

I think we all know how you're feeling, lost. I was in a state of shock for months after my husband was diagnosed with SAA, and I did a lot of crying. Then I decided to get as involved as I could in his treatment and find out as much as possible about his condition so that I wouldn't feel so helpless. It has really helped me to cope, and I believe it has helped him too because he relies on me to help make treatment decisions and I've found out so much from other patients on forums like this one. Even his doctor includes me as part of the team (up to a point) because there's so much they don't know. With rare diseases like these it's so important to educate yourself and become proactive!

Is your husband's doctor well-versed in MDS? I'm wondering why they have given him such a grim prognosis. What category of MDS does he have, and are there chromosomal abnormalities? I'm not saying the doctor is necessarily wrong, but it just depends on what it is they're looking at. There are many types of MDS and some are more benign than others. There are also medications and treatments that are helpful with some of them but not others, so if it were me I'd want to find out why they're saying 2 years and nothing they can do. Get a second opinion if necessary. Even the most seasoned oncologist usually hasn't seen a lot of AA or MDS cases, so it's good for them (or you) to consult with someone who has, before issuing a blanket verdict like that.

Hang in there!