Myelofibrosis & MPNs

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myleofibrosis

  • 1.  myleofibrosis

    Posted Feb 08, 2011 12:51 AM
    myleofibrosis
    I was diagnosed with myleofibrosis five years ago at the City of Hope. I have been on Procrit 60,000units weekly. However; I have had to receive blood transfusions every couple of months when my hemoglobin drops below a 7. I am checking to see if there are any of you out there with my disease. Also are there any support groups in the Orange County, California area?


  • 2.  RE: myleofibrosis

    Posted Feb 08, 2011 04:03 AM
    Myelofibrosis
    Hi Roger,
    You know there are many support groups for patients with myelofibrosis. The best are for patients with myeloproliferative diseases - that is patients with polycythemia, thrombocythemia and myelofibrosis.
    http://listserv.aol.com/archives/mpd-support-l.html
    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=MPD%2dNET&t=&X=4FA89C3DE16F274901
    Kind regards
    Birgitta-A
    71 yo, dx PMF June 2006-Sept 2007. Dx then changed to MDS.


  • 3.  RE: myleofibrosis

    Posted Feb 08, 2011 10:46 PM
    Hi Roger,

    I have Myelofibrosis gr.3/4 along with MDS RCMD.

    Cheers,
    Lynn


  • 4.  RE: myleofibrosis

    Posted May 22, 2011 06:48 PM
    Hi Roger,

    My Father has Myelofibrosis, he is 67 years old and like you was diagnosed 5 years ago. He no longer has blood transfusions and has recently been through 4 rounds of Chemo.

    His body didn't take well to the last round of chemo and is currently feeling pretty yuck. Would love to chat with you and find out how you're going and what you have found useful.

    Regards,
    Jaclyn