Leiomyosarcoma

124

Comments

  • angel18
    angel18 Member Posts: 1
    #62
    leiomyosarcoma specialists
    diaganosed 6 years ago following a hysterectomy , removal of fibroids and tumor discovered. clean for 2 years and then metastasis to the lungs and subsequently now, to the liver, pancreas and spine...As we all know this rare disease has limited treatments.. In my case I have had 9 protocals, repeating gem/tax 2 x and Temodar 2x (off label drug for brain mets). My primary oncologist is Dr. Martee Hensley at Memorial Sloan Kettering in New York. Dr. Hensley had given me the names of the top specialists in leiomyosarcoma.

    Dr. James Butrynski/ Dana Farber Cancer Center/ Boston
    Dr. Scott Okuno/ The Mayo Clinic, Rochester Minnesota
    also at MD anderson speicalist and Univ of Michigan

    Generally, they use the drugs with most success for targeted area first and then when they do not work go to a drug with less success. there are also clinical trials and least course of effectiveness are phase one trials. There is also radiation and RFA ( radio frequency ablation)and surgical removal of tumors with clean margins It is important to do research and seek help wherever.

    hope this information is of help
  • lupe
    lupe Member Posts: 6
    #63
    Leiomysarcoma
    hi there just wondering hows every body its been a long time i haveent sine in will im still here god has me here for a reason i would like to meet some persons, thay told me thats there no cure from this cancer Leiomysarcoma i have it in both lungs i wish some wone out there will talk to me.
  • mb112660
    mb112660 Member Posts: 8
    #64
    lupe said:

    Leiomysarcoma
    hi there just wondering hows every body its been a long time i haveent sine in will im still here god has me here for a reason i would like to meet some persons, thay told me thats there no cure from this cancer Leiomysarcoma i have it in both lungs i wish some wone out there will talk to me.

    Hi Lupe.Im so happy to see a recent post from you. I am newly diagnosed with this disease so I cant offer much information as I am still researching myself. Dont lose hope.God is good and I have seen many comments on the boards of people that are survivng this cancer.How are you doing?What treatment plan are you following? I will be starting radiation treatments soon. Im nervous and scared,but Im sure thats normal. Ill be praying for you.
  • Ginge
    Ginge Member Posts: 7
    #65
    mb112660 said:

    Hi Lupe.Im so happy to see a recent post from you. I am newly diagnosed with this disease so I cant offer much information as I am still researching myself. Dont lose hope.God is good and I have seen many comments on the boards of people that are survivng this cancer.How are you doing?What treatment plan are you following? I will be starting radiation treatments soon. Im nervous and scared,but Im sure thats normal. Ill be praying for you.

    I too am happy to see Lupe's
    I too am happy to see Lupe's post! It's very encouraging to see someone courageously fighting this awful disease. You are an inspiration to everyone! Thank you!
  • mb112660
    mb112660 Member Posts: 8
    #66
    Ginge said:

    I too am happy to see Lupe's
    I too am happy to see Lupe's post! It's very encouraging to see someone courageously fighting this awful disease. You are an inspiration to everyone! Thank you!

    How are you? And how is your husband? If you dont mind me asking,how did he handle the radiation?Im going to be starting treatments in a couple of weeks and am a bit nervous.Will Mike be doing any chemo at all? Where are you located and is treatment being done at a sarcoma center? I wish Lupe would post again. Id like to know how she is doing.Will be praying for Mike and you.

    After reading more of the discussions,some of your posts answered my questions already.
  • Teacherof3
    Teacherof3 Member Posts: 2
    #67
    Support for Uterine Leiomyosarcoma
    Support for those diagnosed with Uterine Leiomyosarcoma can be found at
    http://uterine-leiomyosarcoma.blogspot.com/
  • mb112660
    mb112660 Member Posts: 8
    #68
    Teacherof3 said:

    Support for Uterine Leiomyosarcoma
    Support for those diagnosed with Uterine Leiomyosarcoma can be found at
    http://uterine-leiomyosarcoma.blogspot.com/

    Thank you SOOOO much!
  • dodot
    dodot Member Posts: 14
    #69
    mb112660 said:

    Thank you SOOOO much!

    hello
    hello mb,
    Hope all is well. drop me a hello at ksodders@jlroerts.com i would like to talk to u.

    Thanks
  • mb112660
    mb112660 Member Posts: 8
    #70
    dodot said:

    hello
    hello mb,
    Hope all is well. drop me a hello at ksodders@jlroerts.com i would like to talk to u.

    Thanks

    I tried to email you at the address you provided and received a failure status notification. I copied and pasted the address from your post,is it correct? You can contact me at mb112660@hotmail.com if you would still like to talk to me.
  • kwilli6422
    kwilli6422 Member Posts: 1
    #71
    Ginge said:

    Hi, Like the two of you we
    Hi, Like the two of you we are trying to learn everything we can...we thought about diet changes and have made some, but the UCSF sarcoma specialist said that cancer takes whatever it needs from your body. If you cut out your sugar intake, it will take it from your body in other ways. Your body needs sugar, but the cancer will always take what it needs first. Also my husband lost 30+ lbs after surgery so they didn't want him restricting his diet at all. He was to eat whatever he felt like. He's gained 20 back and is good now. But I am curious what was Greta's tumor growing from, muscle, veins? If you'd prefer not to discuss it that's OK we understand. Mike actually came home from work on a Friday saying he felt like he'd eaten something "bad". He had alot of abdominal pain that radiated to his back. The next morning he got up and wanted to go to the ER. (Totally out of character for Mike!) So we went and they ran all kinds of tests and couldn't find anything wrong. They didn't do a CT just in case it was something he had eaten. But old us they would do it if we wanted it done. Mike decided to wait and see, promising to come back if it got worse. They gave him something for the pain. It didn't get better by Monday morning we were back in the ER and the same doctor was there so he immediately did the CT scan. Several hours later they told us he had a 4cm tumor on his adrenal gland. They are almost always benign (95%). Then it took 2weeks to get a biopsy done. The biopsy was "inconclusive" but showed spindle cells which are not in adreanl glands. At this point I think the doctors knew it was probably LMS but wouldn't say it. They all agreed the best course was for it to come out. So April 14th the surgery was done and we didn't get a final diagnosis until 2weeks later after pathology was done with the tumor. It was so hard because it went from this little benign tumor, to we think it's something else, now we think it might be malignant, and oh yea, you will loose your kidney too. He also never really had any kind of symptoms that something was wrong! It was January 27th when they first found the tumor so it was at least 3 months of not being sure what was going on. Mike's tumor was a grade 3, mostly it was already necrotic (dying. It was a little smaller than they thought too only 3.2 cm. When he got the radiation the doctor said this isn't going to change is survival rate it is just to manage the cancer. They don't want it coming back to this area. Mike looks really good, you wouldn't believe he he's been through all this. We seem good to others but it is so hard! We have a great family support and lots of good friends and most of all have a strong faith and know this has helped us through this ordeal. But it is still the most frightening thing we have had to deal with. We too have grandchildren, Caitlyn is 6, Jack is 4, and Peyton is 18 mths. Jack is very close to his grandpa I don't know what he would do without him. I know this is a strong incentive for Mike as well. Sometimes when I feel sad I just go see one of the kids!
    Sorry if I've gone on too much, it just seems like we needed to find someone else who knows what we are thinking and feeling. Thanks

    Cindy

    New Dagnosis
    Like all the others my husband is 4 out of a million. On Dec.2,2010 he had 18 cm.stage 3 grade 3 LMS tumor removed from his liver. With over half his liver resected and his gall bladder removed got the pathology report as LMS....not real sure it is the primary because liver lms is extremely rare. Only about 17 documented cases. The tumor touched too many organs to have radiation so we began a chemo regimin of Gemzar/ Taxatore today. This is protocol for uterine LMS. No known treatment for Liver LMS .We have been told it will most likely reoccur if it ever even goes away.Our world has been turned upside down and it is helpful to see so many others in the same position for support. Thanks. Kathy
  • Ginge
    Ginge Member Posts: 7
    #72
    mb112660 said:

    How are you? And how is your husband? If you dont mind me asking,how did he handle the radiation?Im going to be starting treatments in a couple of weeks and am a bit nervous.Will Mike be doing any chemo at all? Where are you located and is treatment being done at a sarcoma center? I wish Lupe would post again. Id like to know how she is doing.Will be praying for Mike and you.

    After reading more of the discussions,some of your posts answered my questions already.

    Dear mb,
    Sorry I didn't
    Dear mb,
    Sorry I didn't check the site until now, Mike did wonderfully well with radiation. He didn't miss a full day of work! The last week he went in late twice just from fatigue. He had a little bit of nausea no skin irritation. We are located in Northern California about 1 hr away from San Francisco. We saw a sarcoma specialist at UCSF once, but our health care provider isn't sending him back at this point. He is doing really good, and is getting CT scans every 4 months. He just had one last month. We are watching a "node" in the right lung but it hasn't changed at all since they found it last February. Everyone says that is a really good sign. I hope you are doing well. Where was your cancer? Are you going to a sarcoma center? Let me know how you are!!! I really want to find someone who has beat this stuff! Thanks for the prayers we all need them!
  • Ginge
    Ginge Member Posts: 7
    #73
    kwilli6422 said:

    New Dagnosis
    Like all the others my husband is 4 out of a million. On Dec.2,2010 he had 18 cm.stage 3 grade 3 LMS tumor removed from his liver. With over half his liver resected and his gall bladder removed got the pathology report as LMS....not real sure it is the primary because liver lms is extremely rare. Only about 17 documented cases. The tumor touched too many organs to have radiation so we began a chemo regimin of Gemzar/ Taxatore today. This is protocol for uterine LMS. No known treatment for Liver LMS .We have been told it will most likely reoccur if it ever even goes away.Our world has been turned upside down and it is helpful to see so many others in the same position for support. Thanks. Kathy

    My husband too
    Dear Kwilli6422,
    I am so sorry to hear about your husband. I hope he is feeling somewhat better now. My husband too was diagnosed with LMS his was on the renal vein coming out of the kidney. He had his kidney, most of his adrenal gland and alot of lymphnodes taken out. His stage is at this time 1bsomething I'm not sure. His tumor was small but it too was a grade 3. We are now doing CTs every 4 months watching a nodule in his lung. One thing I will let you know about, my husband has alot of pain at the incision area still, but we got a wrap type thing that he wears and it has really helped him. They sell them in sports stores too. I hope this is a tip that can help your husband's recovery. It's really hard dealing with such a rare disease that's a big part of what scares me the most. Do we ever know if we are doing the right thing or even just doing enough? Just hang in there, we are not alone! Lots of us out here fighting this ugly ugly ugly stuff! Let me know if you would like to contact me. Wish you and your husband some peace and a calm heart.
  • DJK
    DJK Member Posts: 4
    #74
    Melodyyy said:

    Dear TereB,

    I am still in treatment. I am three weeks into my radiation and I have 4 weeks to go. Hopefully, someone will post who has LMS one of these days. Thank you for your advise about the email address. I am really tired but otherwise doing well. How is your treatment going?

    Take Care, Melody

    LEIOMYOSARCOMA
    I was diagnosed with LMS of the kidney in July 2010. Had kidney removed and they say they got it all no treatment for that. In Sept I went for a chest CT and they found about 20 spots between my 2 lungs, as of right now I don't have to do anything because the spots are too small to biopsy. I go back in April for another CT Boy the waiting is starting to get on my nerves. This is my second bout with cancer I had hodgkins lymphoma when I was 19. Now at 55 it's not as easy to go through it again. I hope you are doing well and you are in my prayers Darla
  • gretaal
    gretaal Member Posts: 3 Member
    #75
    Ginge said:

    Hi again, I was happy to
    Hi again, I was happy to find the two of you as well. You feel like you are the only ones dealing with this awful stuff. My husband did really, really well with radiation. They said he might have loose stools, he didn't, not once. They said there was a possibility of skin irritation like a sun burn, didn't happen. He was tired, and he did have some nausea. Over all he did so well. He continued to work while getting his treatments, but this week because of fatigue, he went into work a couple of hours later. I hope this will help Greta going into the treatment! Who was the surgeon at UCSF? My husband's doctor was Chris Freise. He was fantastic! We too were very concerned about the CT after surgery. His was clear as well but the really good news was that the spot in his lung had not changed. The sarcoma specialist from UCSF said this was especially good because after a surgery your body sends out messages to the tissues to heal and grow. Cancer loves this too and you could easily have a lesion double in size in just a few months. He was very encouraged by there not being any change in size. Hopefully it is not a cancer! Congratulations on the clear CT!

    I was wondering if Greta would mind telling me what type of work she does? Mike has worked at one of the Bay Area oil refineries for over 20 years. Apparently the type of chemicals he could be exposed to don't cause this type of cancer. Just curious, I guess we always wonder why and maybe there is no answer to that!

    Cindy (Mike)

    LMS
    Hi, this is Greta here. I was wondering how you and and your husband are doing. I year goes by fast and I really have tried to the whole cancer thing. My 3 month ctscan is due the first of June, 1yr after my surgery. I hope all is good news for you and your family' Try to keep you updated. Greta (larry's wife) Did Larry ever tell you I worked in the food industry in my early years and for the past 10yrs, I've done office work.
  • bsunshine315
    bsunshine315 Member Posts: 1
    #76
    I am one in a million too.
    I am one in a million too. Just diagnosed w leiomyosarcoma in April. I had an emergency hysterectomy and when they did biopsy on the tumor they gave me the news. I am very scared and waiting results of my PET scan.
  • lupe
    lupe Member Posts: 6
    #77
    bsunshine315 said:

    I am one in a million too.
    I am one in a million too. Just diagnosed w leiomyosarcoma in April. I had an emergency hysterectomy and when they did biopsy on the tumor they gave me the news. I am very scared and waiting results of my PET scan.

    lung cancer Leiomysarcoma i
    hi every body god still have me here im sorry i havent wrght to you i been takeing care of my grandkids takeing them to school i guess gods has me here still for a reson i go to get chick every 6 months so ill go on the 17 of this month aug,17-11 hope everything is ok will i hope every wone is doing ok just keep faith in god. aug,8-11
  • hope650
    hope650 Member Posts: 1
    #78
    lupe said:

    lung cancer Leiomysarcoma i
    hi every body god still have me here im sorry i havent wrght to you i been takeing care of my grandkids takeing them to school i guess gods has me here still for a reson i go to get chick every 6 months so ill go on the 17 of this month aug,17-11 hope everything is ok will i hope every wone is doing ok just keep faith in god. aug,8-11

    I'm 1 in a million too.
    I hope this finds all of you doing well.
    I was just diagnoses with stage 1 ULMS. I had a complete hysterectomy on Jan. 6th & they found ULMS within a fibroid tumor. They think they "got it all". I've been to see an OB/GYN Oncologist who has order a CT scan of my chest & abdomen, but as of yet do not know if it has spread. They think I will have to have Taxotere/Gemzar chemo for 6 rounds. To say the least I am scared. I 'll be 54 on the 20th of February & to say the least this was not the birthday present I had in mind.
    I've been reading a lot on the http//:blochcancer.org website. Very pro-patient & power of positive thinking & fighting with all you have.
    If anyone is still out there posting, would love to hear from you.
  • Mo64138
    Mo64138 Member Posts: 1
    #79
    hope650 said:

    I'm 1 in a million too.
    I hope this finds all of you doing well.
    I was just diagnoses with stage 1 ULMS. I had a complete hysterectomy on Jan. 6th & they found ULMS within a fibroid tumor. They think they "got it all". I've been to see an OB/GYN Oncologist who has order a CT scan of my chest & abdomen, but as of yet do not know if it has spread. They think I will have to have Taxotere/Gemzar chemo for 6 rounds. To say the least I am scared. I 'll be 54 on the 20th of February & to say the least this was not the birthday present I had in mind.
    I've been reading a lot on the http//:blochcancer.org website. Very pro-patient & power of positive thinking & fighting with all you have.
    If anyone is still out there posting, would love to hear from you.

    My Fiancee has been diagnosed with Leiomysarcoma.......
    Hello room. I am a 39-year old male that has been in a 5 year relationship with my girlfriend/fiancee. For years, my fiancee has been battling with her fibroids. They have been painful but the pain would eventually go away. Well last year, like in February, we noticed that she continually had discharges and we tried everything and nothing seemed to work. By August of 2011, I first noticed that her little belly was beginning to protrude. By September 2011, the bulge was getting bigger and then it was beginning to push on her bladder. The pain was worsening and she finally decided to have her fibroids removed. Her OBGYN doctor looked at her uterus and made the recommedation that she get her whole uterus removed because the fibroids she had were so big. She agreed. She had the surgery in January of this year and found out that the fibroid we thought was present, had actually degenerated to Leiomysarcoma. We sat in the Oncologist office and they just seemed soooo grim to me.

    The Oncologist ordered an emergency CT Scan of her Pelvic, Stomach and Chest area, as well as all of her surrounding organs. To our surprise they found nothing. However, they want to treat this aggressively so she is now started her 1st leg of a 6-month chemotherapy treatment.

    My question is this......what is the long term prognosis for this type of cancer? I am sooo devastated. I cry silently and this is soooo hard on me. I love my fiancee soooooo much and I cannot picture my life without her. Can someone help me with any advice on the o
  • I miss Pat
    I miss Pat Member Posts: 1
    #80
    Mo64138 said:

    My Fiancee has been diagnosed with Leiomysarcoma.......
    Hello room. I am a 39-year old male that has been in a 5 year relationship with my girlfriend/fiancee. For years, my fiancee has been battling with her fibroids. They have been painful but the pain would eventually go away. Well last year, like in February, we noticed that she continually had discharges and we tried everything and nothing seemed to work. By August of 2011, I first noticed that her little belly was beginning to protrude. By September 2011, the bulge was getting bigger and then it was beginning to push on her bladder. The pain was worsening and she finally decided to have her fibroids removed. Her OBGYN doctor looked at her uterus and made the recommedation that she get her whole uterus removed because the fibroids she had were so big. She agreed. She had the surgery in January of this year and found out that the fibroid we thought was present, had actually degenerated to Leiomysarcoma. We sat in the Oncologist office and they just seemed soooo grim to me.

    The Oncologist ordered an emergency CT Scan of her Pelvic, Stomach and Chest area, as well as all of her surrounding organs. To our surprise they found nothing. However, they want to treat this aggressively so she is now started her 1st leg of a 6-month chemotherapy treatment.

    My question is this......what is the long term prognosis for this type of cancer? I am sooo devastated. I cry silently and this is soooo hard on me. I love my fiancee soooooo much and I cannot picture my life without her. Can someone help me with any advice on the o

    so sorry
    my wife patricia was diagnosed with LMS in 1995 about 9 months after our wedding. It was the most devastating news we could have heard, as there is no cure for it and it is terminal. please Don't give up my friend, as a good attitude and positive thinking goes a long way with dealing with a disease such as this. At that place in time when there was no cure, but we tried chemo , radiation and many clinical trials so that maybe someday there would be a cure. with god close to our heart we were told we would not make our first anniversary which was only a couple months away because her cancer had metastisized throughout her body after a misdiagnosis. with god by our side we not only made our anniversary that year we made three more after that. she passed in july of 1998.

    This was not meant to sadden you but inspire you to love her with all you have , there will be time to grieve later, live everyday to the fullest and treat her like the queen she is. Wake up everyday and tell her you love her and make that the last thing you say when you go to bed at night. I will pray for you.

    Ken
  • momoftrips
    momoftrips Member Posts: 7
    #81
    mecca1961 said:

    Just wanted to say hi. I have read that you would like to connect with someone who has had leiomosarcoma. Hope you are doing well. Please email me if you would like to hear from me. I have been cancer free for over a year now. I take it a day at a time and definitely appreciate each day and every moment.

    My sister and LMS
    My sister just underwent surgery to remove a large mass which seemed to originated on the right ovary. She had surgery Sept. 6th and is healing slowly but surely it was a major surgery.

    Today she was told she has LMS but the thing is they left in her uterus and left ovary are there different type of LMS.

    We go Friday to get her treatment plan and more details. She is only 30yrs not married and not children but has a VERY loving boyfriend that is standing my her side through all this.

    I know we need more details yet but she is really scared. She has an awesome support system family and friends.

    Thanks in advance for prayers and or any input you might have.

Discussion Boards