Myelofibrosis

On 4/25/2007 Deannamarie wrote:

 

On 4/19/2005 Cheryla wrote:

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.

Hi there,  I am going through the exact same thing.  My dad is 64.  He was diagnosed in November.  He has seemed to have gotten weak quick.  He has had about 7 blood tran.  His spleen is huge.  He has lost 40 lbs and has no appetite.  We sent him to the Cleveland Mayo Clinic.  He has been on Thalidimine with Prednisone.  It helped at first, but, is not now.  His legs hurt and he has a hard time walking.  It is very sad.  He seems to have a good attitude, but, told his friend that this thing is beating him.  I go crazy over it and just want a solution.   Prednisone is the best thing, but, can damage the liver.  Prednisone seems to stimulate the red blood cells, but, he can not be on it for very long.  You are right, all of the medicine is so very expensive.  Thanks for listening.  DeannaMarie