Idiopathic Myelofibrosis

[Gena]

Hi - My name is Gena. I developed Myelofibrosis in December 2008. I am transfusion dependent, every two weeks. I was on Revlimid (sp) for about 8 months and then switched to Thildimide and Prednisone for six months. I am now off of both medications as neither medication seemed to be slowing the progressions of the disorder. I am curious to know if there is anybody who has the same disorder and who would share some of the side effects, problems, medications, etc. with me. Because of the number of transfusions, my iron level is high and I take ExJade - not regularily, but often to help this iron overage. My white count is low, but I do take Procrit shots every week and Neulastia shots twice each month. Any information would be helpful to me. Thanks!! :)

[LynnI]

Hi Gena,

I have Myelofibrosis as well, grade 3/4 (severe) along with MDS RCMD. The Fibrosis actually has me more worried than the MDS but in my case I am stable now with no need of Tx's. My Fibrosis has not progressed in the last 2 yrs which is good, hopefully it behaves for a while longer. I have had no treatment other than Valproic Acid which is working wonders for me. Hemoglobin is back up to 136 again, so I am feeling somewhat normal and not complaining :)

Cheers,
Lynn

[Birgitta-A]

Hi Gena,
My dx was myelofibrosis during 16 months and I still belong to a very good support group for patients with myelofibrosis and two similar diseases. Try this link: http://listserv.aol.com/archives/mpd-support-l.html
Kind regards
Birgitta-A
71 yo, dx myelofibrosis May 2006 - Sept 2007