Hi Roger,
Here are some confirmations (my personal) about the info you got about MDS:
1. All of us won't get Leukemia. Infections and bleedings due to low counts are common.
2. Most studies of Vidaza show that a little more than 50% of the patients get some hematological improvement but now I read results from a study where 72% of the patients were improved or had stable disease. The patients had got Vidaza every day during 7 days of a 28 days cycle (Complete response 22%, Partial response 11%, Marrow Complete response 4%, Stable disease 15%, Hematological response 20%):
http://ash.confex.com/ash/2009/webpr...aper21649.html
3. MDS is not a death sentence.
4. Most MDS patients get transfusions and that is not something terrible – I have been transfusion dependent from dx and think that treatment is OK.
5. Blood counts often get worse before getting better with Vidaza. In this study they report that “The median number of cycles to first response was three, and 90% of responses were seen by cycle 6.”
http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=4
6. Most doctors continue the treatment till at least 6 cycles.
7. As far as I understand the worst adverse effects are the low counts - it is dangerous to have very low white blood cells and that adverse reaction should be treated with Neupogen or similar drugs more often than they do at many clinics.
Good luck with the treatment
!
Kind regards
Birgitta-A