Hi Bossywife -
Take a breath and don't panic. Your husband is relatively young and fit and that is all good. I don't think the expectancy numbers you are citing are accurate or especially relevant. Sounds like he's been living with MDS for some time.
I do have a couple of concerns/suggestions/questions -
First, understanding his blast percentage is important. They also should have - or should do cytogenetic studies to see if there are any gene mutations - some mutations effect treatment options and prognoses. I am somewhat concerned that it took so long to get you to a hematologist, and it seems to be taking a while to get a full BMB report and treatment plan. Is there a separate oncologist and hematologist? In my experience the hematologist is also the oncologist. Where are you? You mentioned farm and hockey - does that mean rural Canada? Do you have access to an MDS specialist in a big hospital somewhere? There are many great centers in America but I don't know about other places - but if possible - I'd try and see someone with a lot of experience with MDS - at least for a consult.
Vidaza and a related drug Dacogen can be used to put the disease in remission - maybe reduce blasts, mutations and increase blood counts. Its not a cure. Its sometimes used to get the disease into remission in preparation for a stem cell transplant. Based on what you describe, I'd think your husband would be a good candidate for such a procedure - and again you'd want a consult at a really really good hospital where they do such procedures often. A transplant can be rough but does hold out the prospect of a cure.
I'm 56 and had lower risk MDS for three years - probably several years before that. I recently tried Vidaza but it didn't seem to help much and the disease seems to be getting worse - and the doctors are now recommending a transplant. Nobody is saying I only have four months to live - but rather if all goes well 6 months to be skiing again. If you can find good doctors you trust and develop a good treatment/transplant plan then there is every reason to be optimistic - and staying optimistic is very important! Here is a link to a good presentation that describes the disease and treatment options.
https://www.pathlms.com/aamdsif/cour...tions/8075AThe website for the foundation where the presentation is, and the foundation in general may have other helpful links and resources
All the best to you and your husband. Paul