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?

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-...9C3DE16F274901
Kind regards
Birgitta-A
71 yo, dx PMF June 2006-Sept 2007. Dx then changed to MDS.

Hi Roger,

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

Cheers,
Lynn

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