Lucyeve, I moved from this web site months ago due to the inactivity. The most active site I know of right now is MFSupport@yahoogroups.co.uk I think you will find the support you need there. I am a 66 yr. old male who was diagnosed Primary Myelofibrosis (PMF) in '06. I am currently being treated with Thalidomide, 50mg every other day, and Gabapentin, 100mg daily. Either of these two drugs can be adjusted if need be. I have been on Thalidomide for the past year and my latest Bone Marrow Biopsy (BMB) shows my marrow to be working again. How is that for good news ?
Have you had a BMB yet ? Are you PMF ? Have you been tested for mutation of the Jak 2 gene ?
There are many on going studies right now looking for new treatment drugs. If you will google MD Anderson you will see the updates. They are encouraging. With the proper medications(and they vary for everyone, we are all different) we are all enjoying a better quality of life than we were. The only "cure" I know of at this time is a Stem Cell Transplant. You may want to google that to see if it is for you. (It is not a 100% cure for all).
I feel very blessed to have access to drugs that are maintaining my quality of life to where I can enjoy running my chainsaw, and general yard work, for 6 hrs a day now. Two years ago I was considering my options and having my siblings tested as possible donors. They are not a match.
I don't believe that God brought us this far to abandon us now. He has a plan and purpose for all of us.
May God Bless You,
Bill