Leiomyosarcoma chat

sandrajean
sandrajean Member Posts: 3
edited June 2023 in Rare and Other Cancers #1
I am searching for survivors of leiomyosarcoma and would like to chat about treatments. Sandra from Alaska
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Comments

  • shkay
    shkay Member Posts: 2
    I have a form of LMS, would also like someone to chat with about it. It is so rare that you hardly find anyone with it. The form I have is GIST. Hope you are doing well. I live in West Virginia and attend a cancer support group here, no one had ever heard of my cancer. Hope to hear from you, Sharon
  • tbarbaraxx
    tbarbaraxx Member Posts: 3 Member
    Dear Sandrajean,
    I just came upon this board and your January message. I was orignally diagnosed
    with leiomyosarcoma over 30 years ago. This may seem like a believe it or not message but this is
    the honest truth. I have lived to raise my 2 sons and to see 4 grandsons. So I feel so very blessed. I assume you are working with a good oncologist and hope you are feelling
    optimistic about your future. I will be hoping and praying for you so keep posting.
    tbarbaraxx
  • tbarbaraxx
    tbarbaraxx Member Posts: 3 Member
    shkay said:

    I have a form of LMS, would also like someone to chat with about it. It is so rare that you hardly find anyone with it. The form I have is GIST. Hope you are doing well. I live in West Virginia and attend a cancer support group here, no one had ever heard of my cancer. Hope to hear from you, Sharon

    Dear shkay,
    I am new to this board but not at all new to leoimyosarcoma. I have survived
    for more than 30 years now. I wrote to a Sandra Jean who posted last
    year also. I have had 5 different oncologists and none had had any experience with
    leiomyosarcoma other than my case. However that neve r did prevent giving good care.
    If you are still looking for someone to chat with, I am here.
    Sincerely, tbarbaraxx
  • Jan56
    Jan56 Member Posts: 1

    Dear shkay,
    I am new to this board but not at all new to leoimyosarcoma. I have survived
    for more than 30 years now. I wrote to a Sandra Jean who posted last
    year also. I have had 5 different oncologists and none had had any experience with
    leiomyosarcoma other than my case. However that neve r did prevent giving good care.
    If you are still looking for someone to chat with, I am here.
    Sincerely, tbarbaraxx

    This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.
  • tbarbaraxx
    tbarbaraxx Member Posts: 3 Member
    Jan56 said:

    This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

    I am hapy to be able to write to another 'long tem survivor'...long may we live!!! Though the treatments,
    surgeries, medications may seem harsh they are turniing cancer into a disease instead of a threat
    When I was first diagnosed I had two small boys and now I have 4 small grandsons....a rather
    remarkable turn of events. when I look back on it. You seem to have confidence in your care takers
    and that's so important. Keep me posted. Wishes and prayers, Barbara
  • zhavah123
    zhavah123 Member Posts: 3
    Jan56 said:

    This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

    Jan,
    Your message gives us so much hope!
    My husband was also diagnosed with LMS and had his right kidney and part of ivc removed.

    He is on Gemstar/Taxotere presently. The margins were not clean at the IVC

    What did they do to your IVC. Did they ever reommend radiaton? Look forward to your reply and hope you are doing well,
  • chewy
    chewy Member Posts: 1
    shkay said:

    I have a form of LMS, would also like someone to chat with about it. It is so rare that you hardly find anyone with it. The form I have is GIST. Hope you are doing well. I live in West Virginia and attend a cancer support group here, no one had ever heard of my cancer. Hope to hear from you, Sharon

    I am a leiomyoasarcoma survior. I'm 49 years old. I'd love to chat. my name is Shirley and e mail is [email protected]
  • Shanthu
    Shanthu Member Posts: 2
    hello there, my husband has diagnosed with leiomyosarcoma. he underwent surgery and 5 cycles of chemo. tell meabout your alternative therapy. my email id: [email protected]
  • Shanthu
    Shanthu Member Posts: 2
    zhavah123 said:

    Jan,
    Your message gives us so much hope!
    My husband was also diagnosed with LMS and had his right kidney and part of ivc removed.

    He is on Gemstar/Taxotere presently. The margins were not clean at the IVC

    What did they do to your IVC. Did they ever reommend radiaton? Look forward to your reply and hope you are doing well,

    zhavah
    hello. i am new to this group.
    My husband was diagnosed with a leiomyosarcoma.
    He too had undergone left nephretomy and chemo with adrimycin and iphosphamide 5 cycles.His posterior resection margins were not clear. I would like to know about the chemo that your husband had undergone
    hope to hear from you.
    love
    shanthu
  • rachelle1
    rachelle1 Member Posts: 1
    Jan56 said:

    This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

    I was diognosed with lms in
    I was diognosed with lms in 2007. My primary was the inferior vena cava, right kidney vein and liver. I was started on gemzar and taxoter for 6 months. I had my surgery last July. They ramoved my vena cava and replaced it with a graft. My kidney was saved and had the tumor removed from my liver. No followup chemo. I now have a place in my liver growing. Now waiting to see the surgeon and inverentional radiologist for the next step. Did you recieve all of your treatment at MD Anderson? The closest sarcoma center from me is in Alanta, about 6 hours away. I feel my doctors are very knowlegable on this type of cancer, from what I have researched. But at times I feel I should be seen at the sarcoma center. How are you doing?
  • suefromva
    suefromva Member Posts: 2
    rachelle1 said:

    I was diognosed with lms in
    I was diognosed with lms in 2007. My primary was the inferior vena cava, right kidney vein and liver. I was started on gemzar and taxoter for 6 months. I had my surgery last July. They ramoved my vena cava and replaced it with a graft. My kidney was saved and had the tumor removed from my liver. No followup chemo. I now have a place in my liver growing. Now waiting to see the surgeon and inverentional radiologist for the next step. Did you recieve all of your treatment at MD Anderson? The closest sarcoma center from me is in Alanta, about 6 hours away. I feel my doctors are very knowlegable on this type of cancer, from what I have researched. But at times I feel I should be seen at the sarcoma center. How are you doing?

    LMS of IVC
    How are you doing now? My 52 yr old brother was diagnosed with LMS of the IVC last year after almost dying from strokes caused by the blood clots caused by the tumor on/in the ivc. He has had 5 cycles of gemzar/tax. protocol. A CT scan Monday to see what is happening. Prior CT showed tumor growth had stopped. Hope it is reversed now. Contacting surgeons about ivc tumor removal but also has mets to lungs. Looking at going to Germany to Dr Rolle for that. Currently being treated by U Denver Dr. Elias, but consulting with Sloan Kettering Dr Schwartz,
  • ydlibra81
    ydlibra81 Member Posts: 2
    rachelle1 said:

    I was diognosed with lms in
    I was diognosed with lms in 2007. My primary was the inferior vena cava, right kidney vein and liver. I was started on gemzar and taxoter for 6 months. I had my surgery last July. They ramoved my vena cava and replaced it with a graft. My kidney was saved and had the tumor removed from my liver. No followup chemo. I now have a place in my liver growing. Now waiting to see the surgeon and inverentional radiologist for the next step. Did you recieve all of your treatment at MD Anderson? The closest sarcoma center from me is in Alanta, about 6 hours away. I feel my doctors are very knowlegable on this type of cancer, from what I have researched. But at times I feel I should be seen at the sarcoma center. How are you doing?

    My Neice
    Can anyone reccomend a specialist in Calif.? My neice has ULMS. Diagnosed in April 2009 stage IV. Her medical insurance is limited. And her DR's are pretty much saying get you life in order and prepare to die. Can anyone offer some direction?
  • ydlibra81
    ydlibra81 Member Posts: 2
    rachelle1 said:

    I was diognosed with lms in
    I was diognosed with lms in 2007. My primary was the inferior vena cava, right kidney vein and liver. I was started on gemzar and taxoter for 6 months. I had my surgery last July. They ramoved my vena cava and replaced it with a graft. My kidney was saved and had the tumor removed from my liver. No followup chemo. I now have a place in my liver growing. Now waiting to see the surgeon and inverentional radiologist for the next step. Did you recieve all of your treatment at MD Anderson? The closest sarcoma center from me is in Alanta, about 6 hours away. I feel my doctors are very knowlegable on this type of cancer, from what I have researched. But at times I feel I should be seen at the sarcoma center. How are you doing?

    Rachelle I'd love to chat
    Rachelle I'd love to chat with you because my neice has stage IV ULMS diagnosed in April 2009, not long after you. She needs some kind of support from others with this disease. You can contact me @ [email protected]
  • faith316
    faith316 Member Posts: 25
    ydlibra81 said:

    Rachelle I'd love to chat
    Rachelle I'd love to chat with you because my neice has stage IV ULMS diagnosed in April 2009, not long after you. She needs some kind of support from others with this disease. You can contact me @ [email protected]

    ULMS
    I just noticed your post this morning and want to suggest (if you haven't already done so) that you join us on the Uterine Cancer board. There are many knowledgeable women there who are experienced in researching and fighting cancer. There are not many of us with leiomyosarcoma but many with other types of uterine cancers that can listen, support and share information with you and/or your neice.
  • chrissygenovese
    chrissygenovese Member Posts: 5
    shkay said:

    I have a form of LMS, would also like someone to chat with about it. It is so rare that you hardly find anyone with it. The form I have is GIST. Hope you are doing well. I live in West Virginia and attend a cancer support group here, no one had ever heard of my cancer. Hope to hear from you, Sharon

    Leiomyosarcoma
    I have a cousin who was just diagnosed w this rare cancer. He had a heart transplant almost 3 yrs ago in july...july 4th. He was on immune suppressants and developed epstein bar which they think is what caused this cancer...he has a tumor on his liver and in his brain. They have poked and done procedure after procedure day after day. He has been in the hospital for 2 months now and they aren't predicting he will be out any time soon. How are you Sharon...and when were you diagnosed with this? What do they know so far? and what is their prognosis? if any...

    Chrissy

    If you would like to write me at my personal email, please send to [email protected] or [email protected] will get to it quicker than here.
  • chrissygenovese
    chrissygenovese Member Posts: 5
    Jan56 said:

    This is my first time in a chat room. I am an 8-yr. survivor of LMS and this is my third time with this rare cancer. First diagnosed in '95 after extensive surgery to remove rt. kidney and much of the vena cava, followed by dibilitating adrymyacin chemo. Then went 7 1/2 yrs. cancer free. Last May discovered another "lump" in lower abdominal area; again successful surgery with no followup chemo. In December MRI showed LMS in the liver. Have been to MD Anderson in Houston since then; now on Gemzar for 7 wks. I was so happy and encouraged to learn of a 30 yr. survivor. Would welcome a reply.

    I know I posted a response
    I know I posted a response prior to this...I would love for someone who has survived this rare cancer to please contact my aunt for some support, for she is losing all hope with her son, Tony, who has been diagnosed with LMS. Her son has lived in and out of the hospital since he was 2. He is now 20 yrs old. When he was 2, he began to lose his hair, which was due to the rare disease of AlapeciaTotalla (sorry if this is mis-spelled), an immune deficiency disorder. Thereafter, he was diagnosed w chrones and rheumatoid arthritis, which has heavily added to severe pain issues. 3 years ago, doctors were treating him for Pneumonia, which was misdiagnosed. He had congestive heart failure, which lead to a heart transplant weeks later. The catch is, that one yr prior to this transplant he had mono...which since then has laid dormant inside his body... Since he was on immune suppressants to prevent heart rejection, this mono inside had slowly attacked his cells, which now caused LMS...at least that is the shortened explaination. Since he was diagnosed with this they put him on Gleevek (however this is spelled), a pill-form of chemo treatment while they take him off his immune suppressants. He is at the Cleveland Clinic receiving treatment currently, and is anticipated to be there for a long time because of all the experiments they are trying.

    Long story short, she is really losing her mind and I found this site so that maybe I could find someone in the world somewhere to give her some hopeful information that will keep her chin up during his struggles. The last thing he needs is to give up because someone else may be starting to...not that she will ever do so. BUt I am sure you all understand how difficult this all is, especially when the Doctors don't even know much about it.

    Please someone contact myself about how to contact her if you would like to help. My mother's, her sister, email is [email protected].

    Thank you all...and good luck to everyone battling this. My prayers are with you all!

    Chrissy
  • gawdsgrace
    gawdsgrace Member Posts: 2
    suefromva said:

    LMS of IVC
    How are you doing now? My 52 yr old brother was diagnosed with LMS of the IVC last year after almost dying from strokes caused by the blood clots caused by the tumor on/in the ivc. He has had 5 cycles of gemzar/tax. protocol. A CT scan Monday to see what is happening. Prior CT showed tumor growth had stopped. Hope it is reversed now. Contacting surgeons about ivc tumor removal but also has mets to lungs. Looking at going to Germany to Dr Rolle for that. Currently being treated by U Denver Dr. Elias, but consulting with Sloan Kettering Dr Schwartz,

    LMS - 3rd round!

    Hi suefromva

    How is your brother doing now? Did you go to Germany for treatment?

     

  • Pattie R
    Pattie R Member Posts: 5
    edited March 2017 #19
    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!

  • Maria_50
    Maria_50 Member Posts: 1
    Leioymysarcoma information

    Hi Pattie,

    I have ulms leimoysarcoma. It's crucial to get as much information as possible. Here is a very helpful website to join. Go to lieomyosarcoma direct research fund. I joined and have learned so much about this disease through people who have been through the journey. Please check it out.

    Best  wishes, and God bless..

  • Bettymx76
    Bettymx76 Member Posts: 1
    Maria_50 said:

    Leioymysarcoma information

    Hi Pattie,

    I have ulms leimoysarcoma. It's crucial to get as much information as possible. Here is a very helpful website to join. Go to lieomyosarcoma direct research fund. I joined and have learned so much about this disease through people who have been through the journey. Please check it out.

    Best  wishes, and God bless..

    Hi 

    Hi 

    What is the website?

    Thanks