Anyone with hemagiopericytoma?

inarush77
inarush77 Member Posts: 2
edited April 27 in Sarcoma #1
My mom has hemangiopericytoma. She has it in her heart (they think-can't do an MRI to tell for sure). She has two mets in her lungs and a few in her liver. She's tried Gemcitabine & Docetoxal, Doxil and now is starting temador & avastin. I've joined a hemagiopericytoma group on Yahoo groups but am curious if there are others out there.

Comments

  • ILOVEAVA1289
    ILOVEAVA1289 Member Posts: 2 Member
    #2

    Viet Nam vet & have hemangiopericytoma for abot 4 years. I have been on Votrient for about two & a half years. The side effects are getting to me. The diarrhea is terrible. Had a brain tumor removed, now I have it in my right hip.My doctor told me I am his only patient with this cancer. Hang in their

  • ILOVEAVA1289
    ILOVEAVA1289 Member Posts: 2 Member
    #3

    Same Viet Nam Vet. Still have this disease. Started in left side of head, removed and 30 radiation treatments. Came back in right hip 3 years later. VA though it was arthritis, but my wifes surgeon took an x ray. Sorry, you have cancer. Thank God, my doctor at Emory Hospital knows what he is doing. Pet scan about every 3-4 months. Votrient is the only keeping it in check. Get it free from the drug company.

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