If your insurance allows (or even if doesn't), you should go see Dr Jeanna Welborn at UC Davis.She is the absolute best in the Sacramento area, in my opinion. She is very knowledgeable, passionate, and caring and is well respected in the MDS community. Dr Jason Gotlib at Stanford is also excellent. Even if you do just a single consult with one of them, it could open up the lines of communication with your current doctor.
Be cautious about starting Vidaza unless you are planning to go to transplant. Once you start, you must continue until it stops working. So be sure of your diagnosis and all of your options before you start on that route.
Have you been considered for AA? Have you had a recent BMB? Do you have cytogenetic abnormalities or significant dysplasia to get the MDS diagnosis? Do you know the sub-type of low-risk MDS, as some are more responsive to Immune Suppressive Therapy (IST)?
Do the doctors know why you body can't absorb iron?
53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Last edited by Hopeful : Mon Mar 11, 2019 at 11:27 AM.