Leiomyosarcoma

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  • Heidi03
    Heidi03 Member Posts: 4 Member
    #62

    I was diagnosed with uterine leiomyosarcoma in October 2021. I had emergency surgery as it had ruptured. After recovering I started 14 months of chemo the last one killed the cancer. I had surgery by a sarcoma surgeon at md anderson. Pathology showed no signs on living cancer. My last 3 follow-ups have been clear. Going to a cancer center that has sarcoma specialist is very important! They knew their information, it wasn't easy chemo and surgery, but they are very supportive and all of the doctors know about the cancer and they communicate and work together and they give you all the time you need to answer your question. I highly recommend them.

  • ann1985
    ann1985 Member Posts: 5 *
    #63
    https://csn.cancer.org/discussion/comment/1589161#Comment_1589161
    https://csn.cancer.org/discussion/comment/1714170#Comment_1714170

    Hi and congratulations for ur strength!!! So encouraging to hear stories like your.

    Could you pls let me know which chimio treatment you had last which was successful?!

    My aunt keeps struggling unsucessfully..she is not given any chances of survival and we re desperate to help her. Every 3 months she gets recurrences..huge tumors on liver, intestines…

    Thanks you lots.

    Best regards.

  • ann1985
    ann1985 Member Posts: 5 *
    #64
    https://csn.cancer.org/discussion/comment/1596103#Comment_1596103

    I read your lines in tears since my aunt will soon undergo her last surgery (as a last try) for LMS. She has gone, just like you, through a lot of pain and many surgeries, but unsucesfully. Recurrences are always there. Now, LMS had spread to her pelvic zone and next days will will have a resection with a colostomy bag, too. No other option. All chimio trials failed..

    How did u manage to stay alive? Give us an advice, pls..

  • woody1022
    woody1022 Member Posts: 5 Member
    #65

    Just shy of 10 years and now released from further checkups. Trying to spread hope for others.

  • Heidi03
    Heidi03 Member Posts: 4 Member
    #66

    Praying for your aunt. The chemo that worked for me was Trabectedin (also called Yondelis)

  • ann1985
    ann1985 Member Posts: 5 *
    #67
    https://csn.cancer.org/discussion/comment/1718858#Comment_1718858

    Happy for you. She already had Trabetectid as a scond trial, but didn t work at all for her. Thank you for ur answer and may you stay healthy!

  • Oneinabillion
    Oneinabillion Member Posts: 25 Member
    #68
    https://csn.cancer.org/discussion/comment/1718857#Comment_1718857

    I'm no doctor but have had LMS 4 times now. The 3rd time was local after 12 years. All I know is that when I first got it I was told LMS is not one of those cancers that after 5 years your good. I was told that it can come back anytime in your life and will always need to get at least yearly checkups. I'm going to guess you did not go to MDAnderson or MSK. Because I can't imagine either one of them saying no more checkups. Like I said this is what I heard so take it for what it's worth. Good Luck

  • Oneinabillion
    Oneinabillion Member Posts: 25 Member
    #69
    https://csn.cancer.org/discussion/comment/1339924#Comment_1339924

    wow. This sounds like I could have wrote it. Well 6 years after the first surgery it came back but was very small and just in some fatty tissue. 12 years after initial surgery they find 5 very small nodules in lungs. They said could wait a year or 2 to excise them. In the meantime they discover 2 tumors by the original site. Took them out along with part of pancreas. I was recovering nicely. Went home doing my walking. Then one day about 4-5 days after getting home I took a bad step backwards. I couldn't even walk from the toilet to the sink. My doctor said go immediately to the nearest hospital by ambulance. After 2 more ambulances I ended up back at MSK I'm still here after a month. Turned out got an infection in the pancreas. It happens about 1/3 of the time. Still looking at 2 surgeries for the lungs down the road but I'm still here. Oy

  • ann1985
    ann1985 Member Posts: 5 *
    #70
    https://csn.cancer.org/discussion/comment/1422065#Comment_1422065

    Hi. Is it possible to tell me what chemo trials you have tried so far?

    My aunt already had doxorubicine, yondellis (trabectin), and decarbazine..unsuccessfully :(

    Looks like there is nothing left to try..

    She has undergone several surgeries, but doctors said this one will certainly be the last one, with very high risk..however, she wants to try one more time.

  • Heidi03
    Heidi03 Member Posts: 4 Member
    #71
    https://csn.cancer.org/discussion/comment/1718865#Comment_1718865

    Adriamiacin/Ifocfimide

    Gemcitabine/doxetaxyl

    Decarbazine (mixed with one of the prior I don't remember which one it was )

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