Hello to all,
I am happy to have found a message board. My Mom was dx about a year ago. I am very scared for her and am trying so hard to find help for her. She finished three weeks worth of radiation for an enlarged spleen last week. Her spleen seems to have shrunk, however today she needed three units of blood which took about seven hours.This was the first time she ever needed blood. She was getting procrit shots and yesturday they told her they were no longer helping and she needed blood instead. On top of that he mentioned that the procit was very expensive. What's up with that? I am located in Orlando does anyone know of some good doctors for this. It is obviously very rare. I just would like to know how much time she has. I dont know what to do. Or maybe it might make her feel better to acually talk to someone going thru the same thing it might help. I'll leave my number if anyone might want to talk. Just leave me a message. Tommorow I am going to contact the Mayo Clinic for her. She is not well enough or young enough (65) to receive a transplant. I just have to find a way to give her a little more comfortable time. Sorry the message is long but thanks to anyone who might respond.