[PaulS]

I think the most important thing is to find a doctor you trust and feel comfortable with at an MDS Center of Excellence and not just a local cancer center - don't know where you are but finding a person experienced with MDS is critical. Someone who is not just following a standard protocol but who knows when that protocol may or may not be working, and what else is availably, when to consider transplant, other less conventional drugs - clinical trials and is up on the latest research.
I would travel a couple of hours to my hematologist and was able to arrange for vidaza shots and transfusions locally - but my primary hematologist made all the decisions. She helped me find a local hematologist who would write orders my doctor wanted -He was happy to work with a doctor of some renown and happy to help a sick patient.

Your Local Center won't be doing a transplant if you need one - another reason to look to find doctor at major MDS Center and figure out a way to reduce time traveling - by corresponding and coordinating treatment via phone or email. Its more work but work it in the long term. Good luck
P