Share Your MDS Story

I was diagnosed in December, 2022.  After getting a second opinion (from Dr. Greenberg at Stanford who ordered another bone marrow test), I started chemo (decitabine) in February 2023 and have been getting this the entire time.

It took a few months (until June 2023 to be exact) for it to make any improvement.  All went very well until just recently when I experienced my first setback.  My Hgb went below 10 again, so I received another blood transfusion this month (January 2026).  

I'm still very tired, constantly out of breath, dehydrated, constipated...just not feeling right.

All of this is very unusual for me.  I was always very active, loved to travel and take long walks.

Fortunately, I was able to take a few short trips (had to cancel the longer ones) and celebrate my 80th birthday with my children and grandchildren.

I would love to hear other people's stories, but also see if I can be part of any trials or research. Initially I was told I was "too old"" (past 75) when I was first diagnosed.