Personally, I think all health care providers dealing with MDS shoud read this forum and recommend to patients because it is such a wonderful resource and source of support. This site has really helped me be a much more informed patient, and no good Doctor should be threatened by that..Hema/Oncs have so many other types of patients, and MDS has so many variables patient to patient, they can't possibly keep up on things like clinical trials and such.....
As with anything on the 'net, don't post anything you don't want your Grandmother to see. Or derrogatory comments that should remain private conversations....but I would call them on it and see why is was necessary to put it in your chart without confirming 100% it is YOU!
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly