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    MorganLA shared an experience

    Drug or Chemo Therapy (Jakafi)

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    MorganLA wrote on sbertsch92's wall

    my cancer is actually a rare bone marrow cancer, Myelofibrosis, which from what I am told is a low form of Leukemia. My issue is that I can not find any one in my state that has any knowledge of this cancer, or willing to help me. I have no insurance at present, so therefore stuck with the Charity system, and they really dont care about my issue, they have told me that because my cancer is not tumerous, I am not a high priority ( forgive the poor spelling ). I try to research this but cant find much, and every hospital I try to contact about information, wont talk to me with out doing a financial check on me so they can make appointments for a brief discussion. So, my journey has not been a good one as of yet.
    The Dr who told me of this illness,was actually very kind, he explained he did not know much of this cancer, but what he knew was not good news, so he sent me to Shreveport for further testing and poss. prep for a bone marrow transplant, which they no longer do, and after a few visits there, they reffered me back to the local charity hosp. in my city ( which I understand, was supposed to be monitored once a month, and its easier drive than having to go 3 hours each way to them ) The local system will only see me once every four months, and will not schedule ultrsounds for my enlarged spleen, because it isnt necesary at this time. ANd then being told that I should not work bc of the illiness, but wont give me note that says so. Can anyone help me, is there anyone who understands this form of cancer who can talk to me so I know what to look for, and what to do. I mean, dont you think some one out there would be interested in working with me, because tis cancer is rare, and was caught in the very early stages ? I guess I am just stuck in the back waiting for some one to move over. I do have my faith, and the love of my family who have been great support for me, most of my friends have abandonded me when they heard the C word. But I believe in positive things, Thanks for letting me vent. K

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