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  #1  
Old Tue Feb 8, 2011, 12:50 AM
RogerL RogerL is offline
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Join Date: Feb 2011
Location: Irvine,California
Posts: 1
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?
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  #2  
Old Tue Feb 8, 2011, 04:02 AM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
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.
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  #3  
Old Tue Feb 8, 2011, 10:45 PM
LynnI LynnI is offline
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Join Date: Jun 2008
Location: Ontario, Canada
Posts: 99
Hi Roger,

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

Cheers,
Lynn
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  #4  
Old Sun May 22, 2011, 06:47 PM
Jaclyn Smith Jaclyn Smith is offline
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Join Date: May 2011
Location: New Zealand
Posts: 2
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
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Jaclyn, daughter of Lance dx with Mastocytosis and Myelofibrosis 2006
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