Hey PattiDean!
Welcome to the forum! I'm real sorry to hear about your diagnosis; it's hard to believe sometimes how quickly MDS can come on. It's great that you found marrowforums, because there are a lot of great, supportive (and knowledgeable) folks who participate in this forum.
In terms of learning about MDS and your treatment options, have you checked out the
AA&MDS International website? They have plenty to read online, and will also send you printed materials about MDS. Their
online learning center is incredible, with lots of webinars and presentations you can watch.
Your counts are pretty darned low. What's generally of greatest concern are the whites and the platelets. With low whites, you are open to infection, and low platelets can cause both bruising and internal bleeding. I've observed from reading about other folks on this list, that platelets seem a little different for everyone. Some folks will start to have problems at your 24 platelet count, but other folks seem to be able to get down to 10 before they have problems.
With WBCs at 1.1, you will need to take precautions about infection. Good hand washing, no hanging out with folks who have colds, etc. If you are a gardener, be sure and wear gloves when messing about in dirt. You might want to ask your doc if you need to be on a prophylactic antibiotic to avoid infection or take any other precautions. MDS doesn't actually kill too many people; instead they get pneumonia or some other infection and that does them in.
The counts you have are good ones to look at. I usually look at hemoglobin (HGB) which shows the oxygen-carrying capacity of your red cells, and I like to look at absolute neutrophils (ANC), which are the bacteria and fungus fighting part of your white blood cells.
You are going to have a lot of Complete Blood Counts (CBC) going forward. I'd suggest getting your doctor's staff in the habit of giving you copies of these (they are your records and belong to you under federal law), so you can make a binder full of them. That will help you track your progress.
The Dacogen your doc has prescribed is a standard course of treatment for RAEB-1, though it may be a little more common to try a similar drug called Vidaza. They both work in similar ways. These are not "chemo," in the sense that they won't make your hair fall out, but they are strong drugs that will probably make you feel pretty lousy part of the time. They will also probably reduce your counts before helping them, so you may be looking at more frequent transfusions, including some platelet transfusions.
The standard is to have six months of Dacogen or Vidaza before deciding they didn't work, so don't let your doc stop after four months.
There are lots of great docs in Florida. Since MDS is pretty rare, a lot of patients like to get a second opinion from an MDS specialist (as opposed to a regular hematologist). The folks up at Moffit in Tampa are among the leaders in MDS research, if you want to get a second opinion.
If you have any trouble understanding abbreviations or anything else, just ask here. It's a great group of folks, many of whom are facing just the kind of battle that you have in front of you.
Good luck to you.
Greg