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Myelofibrosis

magritte
magritte CSN Member Posts: 1
edited March 2014 in Bone Cancers #1
Hello,

My aunt was recently hostpitalized because of extremely low blood count, and for a while a number of doctors were unable to find out what was wrong. After four weeks of testa and what not, she was diagnosed with myelofibrosis. Her doctor wanted to start her on thalidomide. We went to see four other doctors because the first one said that she was not 1000% sure either. Ultimately we found another doctor that we liked and came to trust, he said this was not a typical case of myelofibrosis, that it was autoimmune myelofibrosis and so thalidomide was not the preferred treatment, but cortisone is. Now we have no idea which doctor to listen to and since it's a very rare disease, we're pretty much on our own.

Plus, from what I read and hear I understand that myelofibrosis has no cure and the best you can do is receive some treatment to relieve the symptoms and the pain.

So I'd love to hear about any experiences and insights.

Any comment will be much appreciated.

Thank you.
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  • blest2bpw
    blest2bpw CSN Member Posts: 1
    #2
    Dx in June of 2009
    Hi Magritte,

    I was diagnosed with Primary Myelofibrosis in June of 2009. Has your aunt had a bone marrow biopsy? That was how my doctor knew for sure that I had MF. It is chronic and right now the best that can be done is treatments to relieve symptoms. How old is your aunt?
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