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Joined: Jan 2010

I was diagnosed with myelofibrosis in the spring of 09. I have previously had non-hodgkins lymphoma twice. Once it was low grade and the remission lasted 9 years. I then was diagnosed with non-hodgkins, but it was both low and high grade at the same time. After many rounds of chemo, radiation, and a stem-cell transplant I was fine for about 8 years. That is when I was diagnosed with the myelofibrosis. They have tried just about everything with no success. Revlimid (sp?) was the last. It has gotten to the point where I have to go in approximately every 4-5 days to get two pints of blood and two pints of platelets and neupogen shots. However, now it has gotten to where I am experiencing symptoms within two days. Has anyone experienced this before?

charlybrn's picture
Posts: 7
Joined: Feb 2010

It's been a while since your initial post and I've just joined. I hope that you've gotten answers and that you are doing better but thought I would reach out in the event that you are still seeking someone who has experienced what you are going through. I am a CML survivor and my experience was much different but I was also the Patient Services Manager for the Idaho/Montana branch of The Leukemia & Lymphoma Society for 3 years. I would encourage you to contact The Leukemia & Lymphoma Society at www.lls.org and chat with one of the online specialists to see if they can do a nationwide search for a First Connection. First Connection is a volunteer program in which survivors are matched with someone with the same diagnosis. The database is set up so that matches can be pretty specific. For example, you could be matched with someone of the same age at diagnosis, as well as someone with NHL who underwent the same treatment. They may be able to find someone that also received a secondary diagnosis of Myelofibrosis.

Keep Fighting!

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