[maggiemag]

Hi everyone! I have low risk MDS, at least I think it still is; as of last BMB in Sept. this year. I keep reading journal articles whose links were posted here that mention certain mutations that I have never been tested for, like TET2, DNMT3A, TP53 etc. I asked my heme/onc about it and she didn't think they were mainstream yet. Questions: were you tested for mutations other than the abnormal cytogenetics like my 5q-, was it done on BMA or peripheral blood, are the tests covered by Medicare in the states, and is your treatment plan guided by the results?

It appears that I have reached the end of the Revlimid rope. My thyroid is hanging in there with slight hyperactivity, but it seems I have now developed a peripheral neuropathy causing balance issues, and the drug is now on hold. Since PN is not reversible, I will likely not go back on the Rev. My physician wants to put me on Vidaza now. I am thinking it is time to go to Ohio State, being the nearest Center of Exc., since the path is not clear for 5q- patients who fail Rev in whatever way. THey may offer thus testing; I plan on calling first. Thoughts, suggestions?