My husband: MF and ET diagnosed 25 years ago at age 40.

I lead with this because at the time life expectancy was 8 years, he is now 65 and he has never stopped working. His spleen is a bit enlarged (since first dxd) and so is his liver. He is on no treatment except Anegrelide for the ET. He did start eating more healthy.

He was first dxd with ET (Essential thrombocythemia - platelets grew to a 1.3 M. His "Boston" Chief of Hematology couldn't get a BMB with two tries - when I asked to get another doctor to do it he said, "He doesn't really need one....When and if he gets MF, I can tell through blood tests.....AND, Do you want me to be the laughing stock of the hospital?"

With that, we went to NYC and saw super specialist Dr. Silver who easily did the BMB and we walked around enjoying NYC all day. The BMB confirmed MF. Dr. Silver suggested a BMT.

After seeing Dr. Silver, my husband left the "Narcissistic Harvard Teaching Hospital Hematologist" and started seeing Dr. Stone at Dana Farber - what a God send. Stone thought it was too soon to have a BMT, but suggested that we speak to the BMT depts at 3 of the major hospitals in Boston. We did and put his name on the transplant list as his only sibling was not a match. We didn't have to decide until a match was found. I read all the MF BMT support group messages there were at the time...lots of tears. No match ever came.

At that time blood tests didn't show up on graphs making it difficult to follow blood counts and cell shapes over time, so I created my own on Excel and shared it with the doctors. Looking at the graph helped us feel at ease...sometimes the numbers go off, but then they would become "better".

All this said boils down to these message boards helped us push for more and better answers; asking for more testing and the latest options. Sometimes I get overwhelmed and scared with info from message boards. So I leave the reading for another day.

Kathy