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    Shamrock_Bindi started following

    User: CancerNews

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    Shamrock_Bindi posted an update

    Thanks Harry- I had no idea they existed. Just signed up. Blessings and strength to you!

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    Shamrock_Bindi asked a questionSarcoma - Adult Soft Tissue Cancer

    Leiomyosarcoma anyone? Anyone?

    9 answers
    • SuzieTampa's Avatar
      SuzieTampa

      Hi, I was diagnosed with leiomyosarcoma in 2002, and it went to my right lung in 2003 and 2005. I've been in remission since. I'm on the board of the Sarcoma Alliance, which has 2 other LMS survivors and an oncologist who has studied LMS. http://sarcomaalliance.org

      You're welcome to join us on our 2 Facebook pages, live chat, discussion board and Peer-to-Peer Network. Everything is free.

      almost 5 years ago
    • Patria's Avatar
      Patria

      Hello, I also had a large tumor removed from my left upper thigh and lost one and a half of another quad muscles. Prior to the surgery I went through two round of chemo (MAID) then 32 days of radiation and another two rounds of the same chemo. I just finished what was supposed to be my last round of chemo in March and was hoping that my MRI and CT scans done in April would show "all clear". Unfortunately, they found a lesion in each lung. I'm now waiting for another PET and Biopsy authorizations and procedures. Have you taken any thing like votrient? My doctor and I spoke about that briefly. We'll see. What have they done for your lung spot? I'm praying for us. This is a frustrating cancer because like you said it isn't one of the "big box brands" so they haven't done enough research and development. I pray that all is well with you!

      over 4 years ago
    • ChristyLee's Avatar
      ChristyLee

      I am a LMS survivor and have found that connecting with the LMS peeps on the Acor LMS listserve to be very helpful and inspirational. There are around 1000 of us on there from all around the world and we share treatment info, studies, research, etc. http://www.acor.org/listservs/join/73

      Just know, you are not alone!

      about 4 years ago
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    Shamrock_Bindi wrote on acoopr21's wall

    Hey there, where did you end up going? I have Leio too! (or LMS as they say).... Not too many of us out there..... John Healey at Sloan Kettering saved my leg and is going to probably save my life.

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    Shamrock_Bindi shared an experience

    Radiation (External radiation )