hi all my name is eileen i have myelofibrosis and have been told its terminal by the heamotologest and nothing can be done except blood transfusions and pain relief. i have just been reading part of this amazing site. i have actually found some other people that have this. i pray they will get in touch God willing. what has knocked me a bit is these people are getting chemo or other treatment to help them fight it. i am told they cant do anythingit will eventually turn into acute leukemia and they say chemo would only make me feel worse. please let me fight for my life i dont want to lye down and take it i want to be strong and fight . i admire you all so much your courage and laughter as well as tears all of you keep up the great work. beast wishes to you all. if i keep talking i know i will cry. can anyone help. eileen
FormerMember
hi there i am so sorry to hear of your illness . i have got to be honest i know nothing about myelofibrosis i just wanted to send you my best wishes & a hug . i am sure someone will answer your blog who also has the condition is there any chance that you could get a second oppion ? . like i said though i don't know about it so cannot advise. can only wish you luck & hope you get the answers that you need take care love n hugs theresa xxxx
Thinking of you honey. Ask more questions. I dont know about your condition so I cant comment but sometimes you read of other peoples treatments who sound to be in a similar postition to you and that makes you think well why that for them and not for me??? All conditions and patients differ. I found that it was easier for me to get a copy of all my diagnosis, scans and clinic letters and then I could decifer them at my leisure.
Hopefully someone will answer your blog with better info but just so as you know we are all here for support and help for you and your family whenever its needed.
Hi their. I too have myelofibrosis, it was discovered in January of 2008. I fully understand your frustration about this disorder. I was told that the only cure was a bone marrow transplant, but I was too old at 60 and not sick enough at that time .....so just live with it and take it as it comes. Bull****!!!!
My wife found a clinical trial at the University of California, San Fransisco. I applied, was accepted, and was in the trial for 6 months until the side effects became too much and I was taken off the trial in October 2008. I live in Southern California and flew to San Fransisco for that trial.
In January we found a trial in San Diego at the University of California, San Diego. It took me 5 months to become sick enough to get in this trial but now I'm in!
I encourage you to continue to fight the good fight and look for clinical trials you can get into. They are the only option I have so I suggest that you might find them to be helpful as well. Here is a link to a you tube video about our disorder and MY wonderful Dr. Jamieson. Oh by the way I 'm the guy with the suit and tie discussing with Dr. J the changes in my life....
