View Single Post
  #14  
Old Fri Mar 6, 2015, 11:16 AM
PaulS PaulS is offline
Member
 
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Annette -

At 78, you Mom has lived a pretty long life. How aggressive she wants to be in treatment options depends on her health, attitude etc. Is it better to live another year or two and feel relatively good - or do you risk more aggressive treatments with more risk - including the risk of making the quality of life in the final years worse then they had to be? Not easy decisions. Both my parents had somewhat lingering deaths - and my mother's in particular was very distressing to everyone. In retrospect she would have been better off with fewer medical treatments at the end of life.

That said - it still sounds like you really need to find a doctor who is easier to talk to and more forthcoming - and moveable to admit what he doesn't know. I still suggest you or your doctor try and speak with someone at a center that treats a lot of MDS - like MD Anderson in Houston, Weil Cornell in NYC, Dana Farber in Boston - or maybe try and find someone through the AA/MDS foundation -
I'm pretty sure there are other options short of a SCT to at least try - including combination drug therapy using already approved drugs such as lenalidomide or Thalidomide - or a trial using novel substances.
http://www.mdanderson.org/newsroom/n...k-mds-aml.html

Whatever happens, enjoy whatever time you have left together.

Paul
__________________
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
Reply With Quote