Talk:Myelofibrosis

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[edit] Question...

Anyone know why its called "Assmann's Disease"? —Preceding unsigned comment added by 134.29.155.131 (talk) 17:40, 9 April 2008 (UTC)

Here's info on the author's who first wrote about MF/CIMF/AMM/MMM (whatever they call it) Heuck & Assmann http://www.whonamedit.com/synd.cfm/2799.html Alan

[edit] Moving

Moving past all the medical lingo, I can tell you first hand that this disease sucks. But, if you have to have cancer, I guess this is the best one to have. I'm 42 years old with a 35 cm spleen (for reference, a basketball is about 24cm). I'm exhausted and have a hell of a time keeping up with my little boy (18 months old and the joy of my life). If you have this disease, I urge you to get involved with the support groups listed on the main page. I especially enjoy the MDP Support L and the other MPD support listserv. Shoot me a line and keep the faith. I've just started on the Revlimid/Prednisone trial and I'd be happy to share how it's going. God bless and keep the faith, Alan Waco, Texas saalanc@hotmail.com

I should have said previously that I have a 27 cm spleen, but I screwed up. The question of average age was raised. Everything I've seen says around 60. I know people in their 30's and some in their 80's with this. There are even a few teens. I'm hoping that since I'm 42, I'll have some options for a bone marrow transplant if I need it. I'm about to start a JAK2 trial, so shoot me a note if your interested in how it's going. Alan saalanc@hotmail.com Saalanc 01:37, 30 June 2007 (UTC)

I just wanted to update the Wiki community on my disease. I've been diagnosed since 3/06 and I'm now 43. I've been on 3 clinical trials... Revlimid, CEP-701 (a JAK2 inhibior made by Cephalon) and now I'm on another JAK2 inhibitor called INCB018424 made by Incyte. My spleen has now shrunk to a point that it is almost undetectable. My counts are looking better as well. So far, nobody in the trial appears to be having a reduction in marrow, but it's too early to tell (they're only about 6 months into it so far). I'm hoping that this is the one to help us. If you have it, hang in there. There are some amazing breakthroughs in the pipeline. Alan saalanc@hotmail.com