Anyone with hemagiopericytoma?

inarush77
inarush77 Member Posts: 2
edited October 2022 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: 3 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: 3 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.

  • Bohemiana
    Bohemiana Member Posts: 2 *
    #4

    My sister has hemangiopericytoma WHO grade 2. Her tumor was the size of a baseball when it was discovered although she had symptoms for at least 1-year to 6-months before she could get approved to have an MRI. She had a near total resection to remove the tumor in 2020. Then she had 6 weeks of radiation following the craniotomy. Approximately 2 years later--spring 2022--she developed speech problems again. Her doctors said the tumor was back. We went to MD Anderson for a second opinion and they say it's radiation necrosis. She is currently on Avastin (3 injections so far) but no improvement.

  • ILOVEAVA1289
    ILOVEAVA1289 Member Posts: 3 Member
    #5

    From 1st poster on this site. Hemangiopericytoma on left hip and back. The Votrient has stopped working. Had a CT SCAN, HOW THE the new cancer sites look.. Have to see a bone specialist for right hip. The radiation and medicine have weakened the hip. Have to take another medication to stop the bone loss. I do not wish this type of cancer on anyone. Its rare, but I do not know how many vets who were in Viet Nam have it. The Veterans Admin. fought for year years, saying their cancer was not caused by the AGENTG ORANGE sprayed their.

Discussion Boards