I am new to this site and having some difficulty following threads, but my husband was recently diagnosed with Myelofibrosis and we are not thrilled with the doctor we are seeing. We are in New York (LI) and just wondering if anyone on here has someone they think is good.
There is a Facebook group called Myelofibrosis Support Group with almost 2000 members. If you don’t get an answer here I’m sure someone can help you there.
Good luck and God bless.
Sharon thank you for your response. It does sound like you are doing well. Are you by chance in the JNJ trial or the Incyte trial targeting the CALR mutation?
The Incyte trial is not yet recruiting where I am and is the only one near me but I’m working at getting on the list in multiple ways. Cross your fingers for me. Both of these trials seem to be showing promise.
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There is a Facebook group called Myelofibrosis Support Group with almost 2000 members. If you don’t get an answer here I’m sure someone can help you there.
Good luck and God bless.
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1 ReactionNo I am on the DISC-0974 trial. It mostly is targeting anemia, but in my case the Jakafi (Incyte drug) seems to fight with the trail drug.