• Who is here with leiomyosarcoma and what kinds of treatments other than chemo have you done?

    Asked by Debralinnea on Wednesday, August 29, 2018

    Who is here with leiomyosarcoma and what kinds of treatments other than chemo have you done?

    I have metastasis to bone and probably lung plus a large fast growing abdominal tumor.

    2 Answers from the Community

    • JaneR's Avatar
      JaneR

      Hello - I too have leiomyosarcoma. Mine is on the stomach and in my liver. I have participated in 2 trials so far, but both have included chemo. The first one was Doxorubicin Plus Olaratumab. It worked very well giving me an over 15% reduction in size of the tumors. The second one, that I am currently on is Pazopanib and Topotecan. I have also had a reduction in size of the tumor and am currently holding stable with this combination. Neither trial has been easy physically. By working with my doctor I am handling the Pazopanib and Topotecan well with few side effects. It took a while to get there, but has been worth it.

      I wish I could give you other information, but I can't. I wish you luck in finding something that will help. Please feel free to reach out to me if you have any questions or just need to "talk".

      12 months ago
    • Razmataz's Avatar
      Razmataz

      Hi. I too have leiomyosarcoma. Started in the uterus metastasized to the ovaries and then made its way to my tailbone and sacrum. Started in 2014 had surgery to remove uterus then followed with taxotere and gmzar weekley for 4 months. Then had radiation in my vagina. Stayed away for 16 months then came back in my ovaries. Surgery followed by doxorubicin and olaratumab like JaneR. After my treatment with doxorubicin I went to permanent olaratumab. Cancer came back in tailbone and sacrum 8 months after surgery. Did radiation. Stopped the growth but didn't dissolve. Stopped all treatment referred to neurosurgeon who removed tailbone and part of the sacrum end of march. Pain diminished greatly. Got second opinion who said that surgery was only option for pain reduction with leiomyosarcoma. She said chemo really doesn't work. She also told me that it would be back. So while I have no evidence...I have been told to enjoy life to the fullest as who knows when it will be back nor when it will over take me. I don't care if it does but I am trying to live my happiest life ever. If something doesn't bring me joy or is pulling me down I tend to make up and re-evaluate...is this how I want my last "good" days to be. All I can say is hang in there... Hugs... If you need anything We are here for you...

      12 months ago

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