Bond Girl,
I suggest that you visit the
Aplastic Anemia & MDS International Foundation website, contact them, and/or get their
MDS information packet. You should also download the
Bone Marrow Handbook from the
MDS Foundation. Both organizations provide excellent overviews of the forms of MDS, and details about what it means for you and your husband.
Try to clear your schedule so you can attend future doctor's appointments with your husband. I suggest enlisting friends and relatives to help with the kids. Not only will that let one of you take notes while the other asks questions, but your husband will benefit from you being there for support. It's a lot to absorb, and I'm sure you're still shocked at his diagnosis. Doctors sometimes speak quickly and throw in medical terms that you're not familiar with, but meeting the doctor halfway by learning more about MDS will help.
If 4% is the blast count in your husband's bone marrow, then it's presumably in the OK range. MDS is classified into subtypes (you should ask which subtype his has), and the risk goes up when the blast count is over 5%.
We can help if you want to ask about the numbers on his CBC (complete blood count) lab results. You should collect his blood test results so you can spot changes over time. The disease is invisible, inside the bone marrow, but the symptoms of low blood counts are what affect the way you feel.
There's also a lab report on each bone marrow biopsy, but those are hard for us laypersons to interpret. It's best to ask the doctor to explain what the findings mean.
There are pros and cons to clinical trials. You should know which trial the doctor is looking at and what the tradeoffs are versus other types of treatment.