Very interested to read stories of uterine tumour>>mets: Positive experiences

caroscot
caroscot Member Posts: 2
edited March 2014 in Sarcoma #1
Hello folks! My story, still ongoing:- 2008 Hysterectomy for fybroids. Lab report showed stage 1 Leiomyosarcoma. Referral to Oncologist, he recommended Chemotherapy (Adriamycin)although the PET scan was clear, he indicated there was a strong possibilty the cancer was spreading into the blood. After 6 cycles, I had a CT scan which showed Lung mets! Complete shock to me and Doc said it was very unusual for this to happen. Referred to Sarcoma specialist, commenced Pazopanib orally (drug trial). Good result for 8 months (side effects wt loss etc rather hard to take!), then lung nodules began growing again. Commenced VP16 & Ifosfamide (Feb 2010), had 9 cycles of that (whew) with varying side efects. Stopped as results were stable (this chemo had good result at begining, some of the nodules disappeared!). CT scan to check showed the little rascals growing in lungs again so to bring this saga up to date: I've had 3 cycles of yet another chemo= Yondelis (tiredness only side effect). Scans of Abdo and chest done and I get results on 5th Jan. I'm naturally a very optomistic person and do my best to stay chilled. It's awful if your fingers type 'Sarcoma' into google and you start reading...gulp! Better not to! I wanna see if anyone out there can give me a good story, I want 2011 to be the year for Sarcoma, we discover what makes the wee cells grow so fast and loose and tell them it's ok to stop ;o)

Comments

  • tdch4
    tdch4 Member Posts: 1
    #2
    Epithiliod sarcoma
    Hi my story is about my husband, he had six operations to his right hand over a two year period. Found out last March that it was not an infection like the surgeons had thought but Epithelioid Sarcoma. Very rare but most common hand cancer.
    It was a really big shock as we thought he was over the worst and we were just so pleased with skin grafts. He had six rounds of doxirubicin i think this is adriamycin and 20 rounds of radiation to hand. It had spread to lungs and lymph nodes and his results have been no change. nodules in lungs lots of them are the same size which is apparently good news. He has had two small growths removed from face and leg and gets biopsy results 25 January. We are praying they were not connected to sarcoma. He is doing well at the moment, radiation stopped regrowing sarcomas on hand, but we are always worried about lung mets. If there is more growth he will be offered ifosphomide as a last attempt of slowing it down. We just pray it han't changed on next scans in March.
    It is a horrible waiting game but we try to stay positive. Never heard of sarcoma before last March but know plenty about it now. Hope your results are good on Wednesday, please keep in touch i think talking to strangers is so much easier than family some times
    Marie
  • caroscot
    caroscot Member Posts: 2
    #3
    tdch4 said:

    Epithiliod sarcoma
    Hi my story is about my husband, he had six operations to his right hand over a two year period. Found out last March that it was not an infection like the surgeons had thought but Epithelioid Sarcoma. Very rare but most common hand cancer.
    It was a really big shock as we thought he was over the worst and we were just so pleased with skin grafts. He had six rounds of doxirubicin i think this is adriamycin and 20 rounds of radiation to hand. It had spread to lungs and lymph nodes and his results have been no change. nodules in lungs lots of them are the same size which is apparently good news. He has had two small growths removed from face and leg and gets biopsy results 25 January. We are praying they were not connected to sarcoma. He is doing well at the moment, radiation stopped regrowing sarcomas on hand, but we are always worried about lung mets. If there is more growth he will be offered ifosphomide as a last attempt of slowing it down. We just pray it han't changed on next scans in March.
    It is a horrible waiting game but we try to stay positive. Never heard of sarcoma before last March but know plenty about it now. Hope your results are good on Wednesday, please keep in touch i think talking to strangers is so much easier than family some times
    Marie

    ES >> tdch4
    Hi Marie,
    thanks for your reply, this is my first time writing on this support network and I agree, it's easier to express yourself to people who have no family connection.
    I think it's equally as awful for you in a different way, as your husband. My Partner is ALWAYS worried about me and I feel so sorry for him, wish I could make it all go away for his sake!
    I keep telling my partner to go to a support group but he's too busy at work and can't face going back out after he comes home in the evening. We don't have any children (I never thought I'd say this but I'm glad, it means I don't have to worry about them, in fact, my whole life is spent avoiding anything that will worry me!)and our dog died 3 months ago so the house is horribly quiet but I'm able to cope with that. I spend lots of time relaxing and sort of meditating. I think it helps to visualise the nodules and tell them to stop growing! After all, they didn't come from outer space, they are mine! Maybe I have the ability to control them? At least I can feel I'm doing something. Oh, I've babbled on as usual! Keep in touch and oh I wish you both all the best for 25th xx Caro

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