Leiomyosarcoma - Need Answers

dodot
dodot Member Posts: 14
edited March 2014 in Sarcoma #1
My wife has Leiomyosarcoma. Thanksgiving she went to ER and the disease was found in her hip, lung, verta-brea, and liver. The hip had diteriated and Surgery was performed to install a titanium rod for support. Doc was afraid she would break it. No treatment could be done until she healed from Surgery. We are home now but for seven weeks the pain has not stopped. It is actually getting worse. She is on powerful meds. Do u think the pain is related to the Surgery or is something going on with the Cancer. The doctors here in Mississippi is really not experienced in Sarcomas and that alone scares the hell out of me. She is not eating, sleeping and recently is not useing the bathroom. What should I do now. Where should I go. Where can I find a doc that can help her. I love my wife dearly and cant stand to see what this disease has done to my family. Robin is 40yrs old and we have two teenage daughters. God cannot be thru with her yet.


Thank you,
Kendall from Mississippi

Comments

  • Mrsbourceforce
    Mrsbourceforce Member Posts: 19 Member
    #2
    Sorry
    So sorry to hear about your wife.. My husband had a pleomorphic sarcoma removed from his leg last month. We are hoping it didn't get a chance to spread. We are fortunate to have an excellent sarcoma specialist nearby in Buffalo. I can only say that getting to a doctor who specializes in sarcomas is the best thing you can do. We have children as well, 10 and 13.. I know it is very painful. Good luck to your family.
    Jeanette
  • 2taikomom
    2taikomom Member Posts: 4
    #3
    Uterine LMS - check for hormone receptors
    Hi -

    Ask the doctor to order hormone RECEPTOR tests on the tumor they removed. If positive for either estrogen or progestone receptors - she can try the aromatase inhibitor drugs for hormone sensitive cancers like breast and uterine sarcomas. See my personal experience with Arimidex (aromatase inhibitor) below. Just hit 6 years without tumors!

    We have about 500 leiomyosarcoma (LMS) families on the ACOR online group. You will find a lot of medical help & support there!

    ACOR L-M-Sarcoma
    http://listserv.acor.org/archives/l-m-sarcoma.html

    I also write LMSeAlerts to keep everyone updated on the latest LMS research and news. It is an announcement only service, not a discussion group. Join here:
    LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/

    See my other LMS groups & resources below.


    Sending hugs,

    Sharon in San Francisco
    http://www.themonthly.com/feature1011.html

    "Working not Wishing" www.LMSdr.org
    LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/
    ULMS & Hormones Study Group:
    http://health.groups.yahoo.com/group/ULMS-HormoneTherapy/

    1/2002 dx ULMS (fibroid) MI 10/10 hpf, high grade
    6/2002 hysterectomy, left one ovary.
    1/2003 1 L lung met removed by VATS
    9/2003 ovary removed after tumor tested 99% Er and Pr positive
    1/2004 vaccine trial at Dana Farber - didn't work
    5/2004 1 met in chest lymph node & 1 met in L lung removed by thoracotomy
    5/2004 started Arimidex (AI) for 99% estrogen & progesterone receptors
    NED ever since! (no evidence of disease)

    No chemo, No radiation, No angiogenesis inhibitors so far.
    Just 3 surgeries & an aromatase inhibitor (AI) estrogen blocker, Arimidex.
    NED since 5/2004 - since taking the AI.
    Fingers crossed!
    .......................................
  • mb112660
    mb112660 Member Posts: 8
    #4
    2taikomom said:

    Uterine LMS - check for hormone receptors
    Hi -

    Ask the doctor to order hormone RECEPTOR tests on the tumor they removed. If positive for either estrogen or progestone receptors - she can try the aromatase inhibitor drugs for hormone sensitive cancers like breast and uterine sarcomas. See my personal experience with Arimidex (aromatase inhibitor) below. Just hit 6 years without tumors!

    We have about 500 leiomyosarcoma (LMS) families on the ACOR online group. You will find a lot of medical help & support there!

    ACOR L-M-Sarcoma
    http://listserv.acor.org/archives/l-m-sarcoma.html

    I also write LMSeAlerts to keep everyone updated on the latest LMS research and news. It is an announcement only service, not a discussion group. Join here:
    LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/

    See my other LMS groups & resources below.


    Sending hugs,

    Sharon in San Francisco
    http://www.themonthly.com/feature1011.html

    "Working not Wishing" www.LMSdr.org
    LMSeAlerts News Bulletin: http://health.groups.yahoo.com/group/LMSeAlerts/
    ULMS & Hormones Study Group:
    http://health.groups.yahoo.com/group/ULMS-HormoneTherapy/

    1/2002 dx ULMS (fibroid) MI 10/10 hpf, high grade
    6/2002 hysterectomy, left one ovary.
    1/2003 1 L lung met removed by VATS
    9/2003 ovary removed after tumor tested 99% Er and Pr positive
    1/2004 vaccine trial at Dana Farber - didn't work
    5/2004 1 met in chest lymph node & 1 met in L lung removed by thoracotomy
    5/2004 started Arimidex (AI) for 99% estrogen & progesterone receptors
    NED ever since! (no evidence of disease)

    No chemo, No radiation, No angiogenesis inhibitors so far.
    Just 3 surgeries & an aromatase inhibitor (AI) estrogen blocker, Arimidex.
    NED since 5/2004 - since taking the AI.
    Fingers crossed!
    .......................................

    Wow! Thank you so much! Your post is a blessing. You give me hope. Praise God for your results of NED.No chemo or radiation? Was that a personal choice?Im going to check out all the links you provided. Thank you soooo much!
  • dodot
    dodot Member Posts: 14
    #5
    Mrsbourceforce said:

    Sorry
    So sorry to hear about your wife.. My husband had a pleomorphic sarcoma removed from his leg last month. We are hoping it didn't get a chance to spread. We are fortunate to have an excellent sarcoma specialist nearby in Buffalo. I can only say that getting to a doctor who specializes in sarcomas is the best thing you can do. We have children as well, 10 and 13.. I know it is very painful. Good luck to your family.
    Jeanette

    hello
    jeanette,
    i hope so much that god blesses your family. thank u for responding. my beautiful wife lost her battle january 7th and went on to be with the lord. please pray for me and my girls. we need strength and comfort to get thru this crisis. god bless u and your family.

    kendall
  • dodot
    dodot Member Posts: 14
    #6
    Mrsbourceforce said:

    Sorry
    So sorry to hear about your wife.. My husband had a pleomorphic sarcoma removed from his leg last month. We are hoping it didn't get a chance to spread. We are fortunate to have an excellent sarcoma specialist nearby in Buffalo. I can only say that getting to a doctor who specializes in sarcomas is the best thing you can do. We have children as well, 10 and 13.. I know it is very painful. Good luck to your family.
    Jeanette

    hello
    jeanette,
    im always in the chat room. please come there and talk. u will get alot of support there. look me up. leiomyosarcoma i hate it for what it does to familys.

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