Hi Terry. I also have MDS 5q-, for about 8 years or so; lost track. I am relatively stable right now. I had never heard of it either when diagnosed, and I'm a retired RN. I agree with what Barb said. When on Rev. my counts would all go down for a while and then come back up. Initially I had a mild rash which is common I think, but fades. I met a woman at a conference who had been on it for about 10 years if I remember correctly. Her Hb was still over 11!
It is sometimes suggested that patients be seen at a MDS Center of Excellence as not all heme/oncs are that familiar with it. I'm sure there are several centers in California. Your wife might feel better and less anxious if seen at one, or it could increase her anxiety. Your call.
Read all you can on the AAMDSIF site. They sponsor many webinars; some are very basic info and some more technical. The more you understand the easier it is to cope, I think.
Keep us posted, and don't hesitate to ask questions!
Mags