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rcand10s

I was diagnosed with Primary Myelofibrosis in Early Sept. 2013

Posted by @rcand10s in Cancer, Dec 14, 2013

I was diagnosed with Primary Mylofribroses in Early Sept. 2013 My Hematologist wants me to plan a trip up to the Mayo Clinic at some point this year, I'm from Florida. I haven't been able to find much information on my condition but oddly enough one of my co workers that I've worked with for the past 18 years has the same exact disease which is suppose to be a very rare disease, seemed odd he's the only one I've meet that has the same thing as me . He's in real bad shape and has had it for near 3 years. I was wondering if i could hear from someone who has gone through the stem sell therapy. Most people i talk to know nothing about this disease and I'd like to understand more about my condition. I've gone a bit crazy drinking green shakes wheat grass etc, every day for the past two months hoping to feel better, and now I manage my activity better so I'm feeling a bit better, my only symptom is extreme tiredness and as a tennis pro thats kinda rough, also my spline has gotten a little larger but my Hematologist doesn't want to start me on the I think it's called Jak 2 treatment yet unless my spleen gets larger yet.

Tags: myelofibrosis

nicoleferrara

Posted by @nicoleferrara, Feb 18, 2014

Richard,

You can find basic information about myelofibrosis at http://www.mayoclinic.org/diseases-conditions/myelofibrosis/basics/definition/con-20027210.

Mayo Clinic hematologist Dr. Ruben Mesa has produced an informational video on myelofibrosis, discussing the latest research and treatments. You can view it here: http://youtu.be/OEhRn2e-7c4

For information on obtaining an appointment at Mayo Clinic, please visit http://www.mayoclinic.org/appointments.

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rcand10s

Posted by @rcand10s, Feb 18, 2014

Thank you! I'll check it out now!

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