Hi Linda,
Good that Al has so high counts - many doctors should wait with treatment but perhaps it is OK to treat early because it is difficult to find the best treatment for the individual patient.
As several members have written it is better to participate in a Phase II or III trial - many drugs are withdrawn after Phase I because they are too toxic for example for the heart or the liver.
The best treatment results I have seen so far are combinations of Vidaza and one of the so called histone deacetylase inhibitors (HDAC inhibitors). If you look at clin trials gov you can se these trials for MDS:
http://clinicaltrials.gov/ct2/result...syndromes+hdac
There are 2 HDAC inhibitor drugs that are approved for other diseases - Zolinza and Epival - so these drugs can be prescribed off record without a trial.
You can use clin trials gov to see what trials there are for MDS where you live.
You know RCMD Int-1 is low risk MDS so both doctors tell you that Al has low risk MDS.
The reports about chromosome aberrations are too complicated for me too.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron oveload, Neupogen injections 3 times/week for low white blood cells, Thalidomide and Prednisone for bone marrow fibrosis since June 2010 with positive result, asymptomatic