Leiomyosarcoma chat

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  • sara1987
    sara1987 Member Posts: 1
    #22
    sarcoma

    We are very sad

    42 months that my mother's illness

    Doctor twice took her to the operating room

    Courses of chemotherapy and radiotherapy had

    I want to know about health practices in other countries

    Our country is in a drug ban

    And we only have access to the drugs Hindi

    Metastasis is the doctor's diagnosis

    It is very uncomfortable for us

    My mother is 55 years

    The doctor said only six months to live ....

  • SANDRA RAYMER
    SANDRA RAYMER Member Posts: 3
    #23
    LEIOMIOSARCOMA - LUNG

    I am a caregiver of my husband and I think that low carb diet with alkaline feed helps you control the cells. That is why I maintain a hybrid feeding plan.

    For the time being his only treatment plan is chemotherapy, which did not regress the tumor, but stabilized it

     

  • Mrs_Kenney
    Mrs_Kenney Member Posts: 3
    #24
    Pattie R said:

    Leiomyosarcoma of the IVC

    I was just diagnosed with leiomyosarcoma of the IVC. In 2014, after complaining of recurring abdominal pain, my Dr had me get an abdominal ultrasound which showed no abnormalities. Since then I continued to advise my primary Dr. during all subsequent visits that I kept having recurring pain in my abdomen that would usually subside after 1 - 3 days. In February 2017 I was finally sent for a CT scan, then MRI of abdomen and pelvic area. The tests indicated a retroperitoneal mass that invaded and compressed the IVC. There was no evidence of metastatic disease. On March 1, I had a CT Guided biopsy which resulted in failure to take tissue from the mass. The pathology report indicated mostly adrenal gland tissue, so I had to get another CT Guided biopsy. This time the pathology report says it is leiomyosarcoma of the IVC. I would appreciate hearing from anyone who has experience with this type of rare cancer. I have an appointment with the Oncologist on 4/11 to discuss the treatment plan. From what I read about this, open surgery is in my near future. I'm not clear about whether radiation and/or chemotherapy will also be used before or after surgery. I have Humana Gold Plus Medicare Advantage Plan in Palm Beach Co. FL. I am concerned about the copayments for all of the hospitalization and treatments I will need.  

    Please reply with any information that you think might be helpful. Thanks!

    LMS of the IVC

    I hope you are doing well.  In any type of Sarcoma it is imperitive to have treatment done at a Sarcoma Center.  That is your best option for managing this type of rare cancer.  Much Love to you, and I pray everything is going smoothly in your treatment. ♥

  • Mrs_Kenney
    Mrs_Kenney Member Posts: 3
    #25
    SANDRA RAYMER said:

    LEIOMIOSARCOMA - LUNG

    I am a caregiver of my husband and I think that low carb diet with alkaline feed helps you control the cells. That is why I maintain a hybrid feeding plan.

    For the time being his only treatment plan is chemotherapy, which did not regress the tumor, but stabilized it

     

    Hi Sandra Raymer ♥

    I would like to know how your husband is doing, I pray all is positive in his care and outcome.  I am very much interested in the diet you mentioned, I have not heard of this before.  I was diagnosed  recently (April 4th was biopsy dx I believe) with Leiomyosarcoma of the IVC at the Confluence of the right Renal vein.  I am going to Ohio State University - The James Cancer Center for treatment.  I am just beginning this challenging journey, I do know it is most important to be seen at a Sarcoma Center (which is why I chose OSU as they have a Sarcoma Center there.)  But what i haven't found was info on a good diet plan.  Any info would be greatly appreciated.  I also keep in daily contact with other LMS Warriors and Survivors on FaceBook in the LeioMyoSarcoma (LMS) Support Group.  https://www.facebook.com/groups/LeiomyosarcomaLMAsupportgroup/  Would love to see more people join to collaborate experience.  Prayers for healing for your family.

  • Lbran25
    Lbran25 Member Posts: 1
    edited June 2018 #26
    Hello,

    Hello,

    I'm new to this site.  I had a hysterectomy in early May for what was thought to be problematic fibroids. But my pathology report confirmed that I have  Uterine leiomyoysarcoma.

    My doctors attitude and/or demeanor seemed to have changed a bit as she told me it was a surprise to find this as it was rare......

    I'm just trying to find others......how rare are we? 

    This has been so much to take in and i know that since I'm just beginning this it is imperative to gave a support place.....so here I am knocking. Thank you.

     

     

     

  • Hube
    Hube Member Posts: 3
    #27
    Dad survived, now my turn

    Father had a major portion of his stomach removed over 40 years ago from LMS. I was just diagnosed with a LMS tumor in my liver. Presently non-operatable, just awaiting potential attack plan

  • rosytru1
    rosytru1 Member Posts: 1 *
    #28

    Has any treatment worked ?? Do you think a special diet help?

  • Kulickjm
    Kulickjm Member Posts: 5 *
    #29

    Hi,

    I am new to this chat and this site, just wanting to share and listen/read about other's experiences with LMS. My name is Jodi and I am a caregiver for my husband. He was diagnosed with Stage IV , metastatic leiomyosarcoma in December 2021.

    On Dec.5/2021 a wonderful surgical oncologist (Froedtert &Medical College of Wisconsin) removed a tumor and subsequent infection (size 45 cm) from his small bowel. She took 200cm (a person has 400 cm) of small bowel and 1/3 of colon. He has a colostomy.

    His surgeon specializes (best way I can put it) in the area of sarcoma.

    Margins appeared clear at time of surgery but mets were noted in his lungs (biopsy positive LMS) shortly thereafter. Everything was monitored and remained stable, he was feeling great and we lived our newly retired lives. In Sept. 2022 shortly after removal of his IVC filter (placed prior to surger) he developed an internal bleed. Hospitalized to find out location. CT showed some changes at site of resection. So it was decided to begin chemo (Doxil).

    He was put on anticoagulant meds but then had significant recurrence of blood clots. They have had to balance that through lots of tests, hospital stays.

    As far as the chemo, there is evidence of progress as far as reduction in size of lesions (lungs, small bowel) but also suspicious "spots" in liver recently seen in scan.

    I would also note that he had a reaction to the Doxil with his first treatment. They needed to stop it, administered more meds, reduce rate then start again. He has had 5 rounds so far and this has happened 4/5 rounds . However, they give premeds at home as well as before treatment and he is having less of a reaction.

    In the beginning of December he had a bout of pnuemonia, hospitalized 9 days. In ER this week due to fever.

    He also gets labs done often to monitor his hemoglobin because of the bleed etc.

    We travel 1.5 hours to see his team.

    Despite this "craziness" my husband is positive, feels great most of the time, hunts, fishes, plants food plots, hikes and plays with the granddkids. We can be pretty busy at times (live in Wisconsin) Its when he is down it so difficult to watch and I think I become more exhausted with the travel, and arranging for things at home when he has been hospitalized.

    He loves his team (they are a sarcoma team). They strategize and are always changing and adapting.

    We just pray and are grateful for each day , knowing there is likely no cure but pray and hope that treatment does what it is meant to do.

    Thanks for listening and I pray for anyone going through cancer.

  • bjgrissom
    bjgrissom Member Posts: 2 *
    #30
    https://csn.cancer.org/discussion/comment/497399#Comment_497399

    Hey I’m newly diagnosed with LMS and just starting my journey/treatment plan with MD Anderson in Houston. 🙏🏾🙏🏾🙏🏾

    Happy to hear your story and I’d love to stay in touch to support and encourage each other.

    Be Blessed. 🙏🏾

  • bjgrissom
    bjgrissom Member Posts: 2 *
    #31
    https://csn.cancer.org/discussion/137017/leiomyosarcoma-chat

    Hello Sandra

    I was newly diagnosed with LMS. Looking for a support group or others to connect with.

    🙏🏾🙏🏾🙏🏾Bonnie

  • Oneinabillion
    Oneinabillion Member Posts: 25 Member
    #32
    https://csn.cancer.org/discussion/comment/1703379#Comment_1703379

    First LMS tumor removed 2012. 2nd 2018. Now in 2023 have 2 tumors in lung. I guess I’m already living on borrowed time As I found out a recurrence is most problematic because it ups the odds significantly of more recurrences

  • mluebbert67
    mluebbert67 Member Posts: 4 Member
    #33

    im all over cheating about this sarcoma.

    I found that cryo- ablation has helped, it hasn’t cured anything or killed it… But it has eliminated tumors and their growth. Maybe extended the possibility of two years in that area of which was my lungs.

  • mluebbert67
    mluebbert67 Member Posts: 4 Member
    #34
    https://csn.cancer.org/discussion/comment/1704523#Comment_1704523

    I’m here as well

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