Hey PattiDean!
Apologies on my assurance that your hair won't fall out; I checked the Dacogen side effects, and, sure enough, hair loss is one of them (I have to admit, that's not much of a concern for me either; I'm not quite a cue ball, but I am pretty bald on top.) Lots of folks do call Vidaza and Dacogen "Chemo," so no worries on that score either.
Since you guys are kind of isolated down there in Clearwater, you might want to consider checking in with the AAMDS folks about a "Community of Hope" they are trying to organize in the Tampa/St. Pete area. They already have these local support groups up and running in other areas, and are trying to start one in your area. It could be a great chance to meet real live people who are fighting the same fight. You can call Community Development Manager Martha Crews at (301) 279-7202 x103 or email her at
crews@aamds.org to let her know you are interested.
You will probably have to ask for a copy of your BMB results to find out about the chromosomal abnormalities. It's in a part of the report called Cytogenetics. If you can't figure out how to read it, either I or someone else here can help. You can also ask your doc, to see if he'd like to elaborate on the findings.
I'm a little concerned about your description of your relationship with your doc. I think anyone on this forum would tell you that you need a strong, positive relationship with your oncologist, with plenty of open communication. MDS can be a hard road, and an uncommunicative doctor doesn't make it any easier. You may have to have a firm talk with the young man to get his head screwed on straight -- or go find yourself another doc.
It scared the crap out of me and my wife when I was diagnosed with MDS. But I put on my hip boots and waded into the information about the disease, and, as I learned more, I began to understand that it's a complicated disease with lots of unpredictable twists and turn, but lots of folks manage to live quite a while with it.
Good luck to you!
Greg