Leiomyosarcoma

245

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  • Bella29
    Bella29 Member Posts: 5
    #22
    tanyah said:

    my cousin has been fighting this type of cancer for almost a year now... she has tried several types of chemo with little or no response... i have read some web sites were past survivors had used herbal or homeo therapy... has anyone here ever had any sucess with alternative treatments or can recommend anything... i would appreciate the advice... she does not get online to read too much about her cancer. im sure most of the information is too grim for her to deal with right now... i hope someone can help... thank you... and best wishes to you all...

    Has she tried the Gemcitibine(Gemzar), taxotere?
    I wrote a long reply to you yesterday and it wasn't posted. They don't know why, so it this posts I will write more in detail. I was first diagnosed with Stage IV
  • TIFFYSMOM
    TIFFYSMOM Member Posts: 1
    #23
    Bella29 said:

    Sloane Kettering is using a protocol of Gemzar(Gemcitabine), and Taxotere. She may also be eligible for a drug called Gleevic(sp?). I was not, but think it had to do with some genetic marker-forget why. My local oncologist used this protocol. I was first diagnosed 5/05 and have been cancer free since the end of the chemo regimen. He removed all the cancer first, and the fluid surrounding it. Went on chemo for six sessions, did an exploratory, found small area on bowel still infected. Finished the 8(total) session chemo regimen, and I have been great since then. Please, if you are not close to Sloane Kettering, find a good oncologist in your area that specializes in the area that tumor appeared. Mine was Uterine and all surrounding areas.So I have a GYN/Oncologist. I highly reccommend him. They did a total hysterectomy for me, removed the omentum and some other things. If you would like to tell me where your cousin lives/is, I can ask him to refer somewhere there. There is also a procedure not available in NY called intraperitoneal hypthermic perfusion. They pour the heated chemo into the abominal area. Risky,but worked wonders for my cousin who had adenocarcinoma. I know it is done in Pa. OH. and her Dr. moved to CA. so maybe there too. But I need to know site of origin and Stage to tell him. I had a zero to 20% chance of living 5 years. They said I might only have 3 months because my original gyn missed the entire thing. Don't give up hope. There are great Doctors out there.

    Hello my name is Vickie.I am actually writing for my best friend who was diagnosed in May with Leiomyosarcoma.She has so far gone through her first round with chemo and ended up allergic to it She had first degree burns on both hands and an awful rash all over her body.They did not give her the last round.she then went right into her radiation of 6.5 weeks everyday,now starting with the high dosage then into another round of chemo. she has expressed to me many times wishing she had someone to talk to who has this disease.I have been up nights on this computer searching endlessly trying to find info and support groups with no success.Until this morning.If there is someone out there who would like to speak with my friend Debbie please notify me ( alsgirl4always@yahoo.com ) I would love to be able to do this for her.It might comfort her some to be able to speak to someone else.She is 48 yr old .Married to a wonderful husband and has grandchildren.That keeps her motivated.She has a positive out look but I think that is diminishing slowly.She is very scarred about her next round of Chemo.She has expressed to me that when she is in radiation and fluids she hears others getting hope from the nurses there But she gets none.Just from her friends.Could someone please help me try to help her a little bit.Thank you so much.
  • TreeHugger
    TreeHugger Member Posts: 9
    #24
    tanyah said:

    my cousin has been fighting this type of cancer for almost a year now... she has tried several types of chemo with little or no response... i have read some web sites were past survivors had used herbal or homeo therapy... has anyone here ever had any sucess with alternative treatments or can recommend anything... i would appreciate the advice... she does not get online to read too much about her cancer. im sure most of the information is too grim for her to deal with right now... i hope someone can help... thank you... and best wishes to you all...

    I had uterine LMS which spread to my left lung...both removed surgically. I was told chemo does not usually help, so I had none. One year later "something" showed up in my right lung....Too small to determine exactly what it was according to my Dr's.....I had acupuncture, homeopathy and Chinese medicine. Now the lesion is shrinking. Was it cancer or just something benign? Who knows? Tell your cousin to try it, but be careful. There are a lot of quacks in the alternative med. feild. Ask to see credentials and check the Dr. out on-line.
  • wolfee59
    wolfee59 Member Posts: 1
    #25
    sur5er said:

    I'm not one in a million - yet. Mine is only about one in 10,000 to 15,000 from what I've seen on international websites. I have appendiceal adenocarcinoma (cancer of the appendix). They don't even keep figures of how many people there are in the US with this, since it is currently so rare and it gets treated aa colon cancer, so they numbers are hidden in with all the other colon and rectal survivers.

    I was diagnosed as stage IV after my surgery and given between 6 and 18 months survival by 3 oncologists. That was 3 years ago this month.

    I am still undergoing chemo (5-FU, Leucovorin and Oxiliplatin). They keep finding new nodes, which they say are metastatic, but they have never biopsied any of them to verify this. I have a renal cyst, numerous nodes in both lungs and "some involvement" in the bladder. The good news is that with the exception ofseveral new nodes in the lungs found earlier this month, everything else is either stable or has actually reduced in size during the last 12 to 15 months.

    It's always nice to meet another "rare" person.

    my mom was diagnosed in june 07 with appendix cancer [Pseudomyxoma Peritonei] at barnes jewish hospital in st louis. it was stage 4 and because she was not a candidate for debulking procedure they sent us home to work with our local oncologist who knows nothing about this type of cancer. we are very frustrated that we cannot gather any data or talk to anyone with similiar cancer, so if you have any suggestions on where you gathered info and answers we would be forever grateful. i have contaced all the cancer organizations and they simply reply, sorry thats a rare one and we have no info. thanks, and i hope to hear back from you soon, Greg
  • branG
    branG Member Posts: 5
    #26
    tanyah said:

    my cousin has been fighting this type of cancer for almost a year now... she has tried several types of chemo with little or no response... i have read some web sites were past survivors had used herbal or homeo therapy... has anyone here ever had any sucess with alternative treatments or can recommend anything... i would appreciate the advice... she does not get online to read too much about her cancer. im sure most of the information is too grim for her to deal with right now... i hope someone can help... thank you... and best wishes to you all...

    im from louisiana my mom was just diagnosed with
    uterine leiomyosarcoma 2 weeks ago after a full
    hysterectamy it has spread to her lungs we are not sure of anything else we had a pet scan done yesterday just waiting on the results.we were also referred to md anderson in houston so we are seeing her options ... branG
  • branG
    branG Member Posts: 5
    #27
    mecca1961 said:

    I would love to chat with you sometime. I am 45 and was diagnosed with LMS in my unterine muscle this July 2006 and it was after my hysterectomy. It was stage I and the margins were good so they think I am doing well. I am simply looking for someone to chat with that has had the same type of cancer.

    HI IM FROM LOUISIANA MY MOM IS 50 AND WAS DIAGNOSED WITH UTERINE LEIOMYOSARCOMA 2 WEEKS AGO
    AFTER HER HYSTERECTOMY ITS ALSO SPREAD TO HER LUNGS WE ARE NOT SURE WHAT STAGE OR IF IT SPREAD WE TOOK A PET SCAN YESTERDAY AND WAITING FOR THE RESULTS. HER DR IS REFERING HER TO MD ANDERSON IN HOUSTON TO SEE OUR OPTIONS OR WE WILL START CHEMO. SHES VERY DEPRESSED AND FEELS ALONE AND I
    JUST WANT HER TO TALK TO OTHER PEOPLE WITH THIS RARE DISCEASE SHE WAS FINE A COUPLE OF MONTHS AGO
    AND STARTED HAVING PELVIC CRAMPING AND HEAVY BLEEDING AND WENT IN AND HAD A PELVIC MASS TAKEN OUT WHICH LED TO HER GETTING A FULL HYSTERECTOMY AND A 6 PINT BLOOD TRANSFUSION SO SHES HEALING RITE NOW . JUST WAITING ON RESULTS
  • branG
    branG Member Posts: 5
    #28
    TIFFYSMOM said:

    Hello my name is Vickie.I am actually writing for my best friend who was diagnosed in May with Leiomyosarcoma.She has so far gone through her first round with chemo and ended up allergic to it She had first degree burns on both hands and an awful rash all over her body.They did not give her the last round.she then went right into her radiation of 6.5 weeks everyday,now starting with the high dosage then into another round of chemo. she has expressed to me many times wishing she had someone to talk to who has this disease.I have been up nights on this computer searching endlessly trying to find info and support groups with no success.Until this morning.If there is someone out there who would like to speak with my friend Debbie please notify me ( alsgirl4always@yahoo.com ) I would love to be able to do this for her.It might comfort her some to be able to speak to someone else.She is 48 yr old .Married to a wonderful husband and has grandchildren.That keeps her motivated.She has a positive out look but I think that is diminishing slowly.She is very scarred about her next round of Chemo.She has expressed to me that when she is in radiation and fluids she hears others getting hope from the nurses there But she gets none.Just from her friends.Could someone please help me try to help her a little bit.Thank you so much.

    my mom was just diagnosed with uterine leiomyosarcoma after a hysterectomy 4 weeks ago and we found out it spread to her lungs pelvic region and bones she has had 8 pints of blood total transfused to her in this time also shes in the hospital in so much pain she got a port put in yesterday and started radiation and chemo yesterday shes suffering on her left abdoman side and her legs i cant wait to see her better the drs. say she doesnt have very long but i beleive in miricales and im gonn fight this with and for her shes a 50 year old mother and grandmother and my best friend she was healthy 3 months ago never sick and now she cant walk with her pain please respond soon brandi my webpage is under brang
  • branG
    branG Member Posts: 5
    #29
    TIFFYSMOM said:

    Hello my name is Vickie.I am actually writing for my best friend who was diagnosed in May with Leiomyosarcoma.She has so far gone through her first round with chemo and ended up allergic to it She had first degree burns on both hands and an awful rash all over her body.They did not give her the last round.she then went right into her radiation of 6.5 weeks everyday,now starting with the high dosage then into another round of chemo. she has expressed to me many times wishing she had someone to talk to who has this disease.I have been up nights on this computer searching endlessly trying to find info and support groups with no success.Until this morning.If there is someone out there who would like to speak with my friend Debbie please notify me ( alsgirl4always@yahoo.com ) I would love to be able to do this for her.It might comfort her some to be able to speak to someone else.She is 48 yr old .Married to a wonderful husband and has grandchildren.That keeps her motivated.She has a positive out look but I think that is diminishing slowly.She is very scarred about her next round of Chemo.She has expressed to me that when she is in radiation and fluids she hears others getting hope from the nurses there But she gets none.Just from her friends.Could someone please help me try to help her a little bit.Thank you so much.

    my mom was just diagnosed with uterine leiomyosarcoma after a hysterectomy 4 weeks ago and we found out it spread to her lungs pelvic region and bones she has had 8 pints of blood total transfused to her in this time also shes in the hospital in so much pain she got a port put in yesterday and started radiation and chemo yesterday shes suffering on her left abdoman side and her legs i cant wait to see her better the drs. say she doesnt have very long but i beleive in miricales and im gonn fight this with and for her shes a 50 year old mother and grandmother and my best friend she was healthy 3 months ago never sick and now she cant walk with her pain please respond soon brandi my webpage is under brang
  • mecca1961
    mecca1961 Member Posts: 2
    #30
    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

    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.
  • Catrinka
    Catrinka Member Posts: 2
    #31
    Melody, Try going to http://listserv.acor.org/archives/l-m-sarcoma.html, this is a group board with a lot of LMS survivors. You can get support and information. It was a little difficult at first for me to get signed up, just keep trying if it doesn't work the first time. Another one you can try is LMSarcoma@yahoogroups.com. I was diagnosed with ULMS 9/07 and just finishing up my chemo. Good Luck and be well. Catrinka
  • lupe
    lupe Member Posts: 6
    #32
    Catrinka said:

    Melody, Try going to http://listserv.acor.org/archives/l-m-sarcoma.html, this is a group board with a lot of LMS survivors. You can get support and information. It was a little difficult at first for me to get signed up, just keep trying if it doesn't work the first time. Another one you can try is LMSarcoma@yahoogroups.com. I was diagnosed with ULMS 9/07 and just finishing up my chemo. Good Luck and be well. Catrinka

    lupe
    helo my name is lupe and i have long cancer the name of it is leiomysarcoma i would like to meet persons with the same sicknes i went to chemo on 3-5-09 im doing ok for the first day i have to go agin 3-12-09 then one week off so how are you doing i hope your doing fine.thank you.lupe
  • lupe
    lupe Member Posts: 6
    #33
    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.

    lupe
    hi my name is lupe and i have cancer stage 4 the name is leiomysarcoma i got my first chemo on 3-5 09 then ill go agin 3-12-09 then one week ill be off i realy dont know much of this sicknes but i would like to know how your doing and how your feeling,sent me a mesage please.lupe in calif.
  • mfrank1032
    mfrank1032 Member Posts: 1
    #34
    hello
    i just read your post and i too have just undergone a total hysterectomy for fibroid which turned out to have lMS in the uterus. My gyn. sounds very optimistic about having removed everything, however, i am sceptical at this point. I was just wondering how you have been getting along with your post diagnosis of LMS? i look forward to hearing from you or anyone else who may have the same type. I am only 38 years old!
  • RichOK
    RichOK Member Posts: 8
    #35
    I'm with you
    I must be one of the 650. I was diagnosed in January of this year. Had surgery in February, still have to start radiation; due to a problem with my lower jaw, and the radiation in the neck, they have to pull all my teeth first. That's being done next Tuesday, radiation starting two weeks after that.

    It's an interesting trip. Hope things go well with you.
  • nantee
    nantee Member Posts: 2
    #36
    I call it Leo
    I was diagnosed with a cancer called lalamoma in June, 08. That's all I heard after they said the word Cancer. It was leiomyosarcoma. I asked her to write it down. Never heard of this. Nobody else has either. Operated on in August. Removed a tumor the size of a peach attached to my bladder. Had chemo in October. Radiation in Jan-Feb. Now waiting. Getting a new scan in May. From what i read this stuff comes back. Help me learn more. How do we fight this??
  • nantee
    nantee Member Posts: 2
    #37
    lupe said:

    lupe
    helo my name is lupe and i have long cancer the name of it is leiomysarcoma i would like to meet persons with the same sicknes i went to chemo on 3-5-09 im doing ok for the first day i have to go agin 3-12-09 then one week off so how are you doing i hope your doing fine.thank you.lupe

    chemo
    I had chemo and it wasn't that bad. they gave lots of medicine to not throw up. i was really tired, the more i went. at the end of chemo i could hardly get up for a couple of days. good luck
    My radiation was the worst.
  • Leiogirl
    Leiogirl Member Posts: 2
    #38
    nantee said:

    I call it Leo
    I was diagnosed with a cancer called lalamoma in June, 08. That's all I heard after they said the word Cancer. It was leiomyosarcoma. I asked her to write it down. Never heard of this. Nobody else has either. Operated on in August. Removed a tumor the size of a peach attached to my bladder. Had chemo in October. Radiation in Jan-Feb. Now waiting. Getting a new scan in May. From what i read this stuff comes back. Help me learn more. How do we fight this??

    Leo
    Hello I just joined this site June 5 th 2009 and wish I had been brave enough to come here sooner. I remember the day I was diagnosed with Leiomyosarcoma April 10 2006, it was my Mom's birthday as we sat together waiting for the doctor to come in and talk to us. I didn't even hear the name of the cancer as a friend at the time was taking notes and writing everything down. All I remember asking the doctor was how long did I have? He said "Well Cancer is classified in stages and your a Stage 4. Ok what does that mean? When Cancer is caught in it's earlier stages it's more easily treated and success is good. Ok get on with it was all I could think, is this man talking in riddles? Then he hit me with the knock out punch -- There is no cure for what you have -- the best thing I can offer you is hope. I felt like all the air had been sucked out of the room as he got up and left. Real smooth bedside manner right? Anyway they removed a golf ball sized tumor out of my right arm. But by then the Cancer had already spread down to my hips and curvy butt bone, lower back and a few different spots on the verterbra. I have had countless Chemos Adriomyson, ifosfomide, gemzar, taxol, doxilrubin, doxil, gemcidebeme (sorry about the spelling). I have just started a new medicine regimine of carboplatin, abraxine, advastin, and zometa. This is absolutely brutal. Severe constipation and neausea every dam day. After I had the tumor removed from my arm they radiated it and it has been clear. In fall of 2008 I underwent radiation to pelvic area and lower back. I was so sick. 52 days strait of the runs and most trips to the bathroom in one day was 21 times. I practically slept and spent my days on the bowl. Fun times!! I hate Cancer and chemo. I am so sick and tired of being poked, prodded, stuck, infused, pinched, sometimes I feel like getting in my car and driving off and never coming back. I mean how much more can one person endure? Anyone else out there feel like I do? I have yet to actually chat or meet someone else with this rare Cancer. If anyone can provide me with some inspiration it will be very much appreciated.
  • donna1960
    donna1960 Member Posts: 2
    #39
    mfrank1032 said:

    hello
    i just read your post and i too have just undergone a total hysterectomy for fibroid which turned out to have lMS in the uterus. My gyn. sounds very optimistic about having removed everything, however, i am sceptical at this point. I was just wondering how you have been getting along with your post diagnosis of LMS? i look forward to hearing from you or anyone else who may have the same type. I am only 38 years old!

    LMS
    I too had a total hysterectomy 1/6/09 for a fibroid that turned out to be LMS. My uterous was removed back in 1997 because of a fibroid which they now believe was misdiagnosed and this is a reoccurance. Mine was low-grade so my treatment is to be monitored with chest x-ray, blood work and CT. It is nice to talk to someone who's been through this. My family thinks I worry about this to much. I'm 48. Good Luck!
  • arianasaunt
    arianasaunt Member Posts: 1
    #40
    RichOK said:

    I'm with you
    I must be one of the 650. I was diagnosed in January of this year. Had surgery in February, still have to start radiation; due to a problem with my lower jaw, and the radiation in the neck, they have to pull all my teeth first. That's being done next Tuesday, radiation starting two weeks after that.

    It's an interesting trip. Hope things go well with you.

    Leiomyosarcoma
    My sister was diagnosed last year after 2years of pain and bleeding and her Dr. ignored it and kept telling her it was fibroids in her uterus. We finally got her to see another Dr. and that's when she had surgery and found out it was malignant. Her follow up in June showed mass in her ovaries and had hysterectomy on Aug. 31 (she is still in the hospital). It spread thru her large intestine and had to take out part or her intestine. Her doctor recommends chemo/radiation. We are all so scared. I spend days/nights researching about this cancer. Maybe I can get her to get online and share her experience with others and know that she is not alone and get some insights as well. Please post any suggestions or recommendations on how she get passed the shock and start fighting.
    Hope your treatment is going well, and I pray for everyone who has this type of cancer.
  • dwinmtp
    dwinmtp Member Posts: 2
    #41
    donna1960 said:

    LMS
    I too had a total hysterectomy 1/6/09 for a fibroid that turned out to be LMS. My uterous was removed back in 1997 because of a fibroid which they now believe was misdiagnosed and this is a reoccurance. Mine was low-grade so my treatment is to be monitored with chest x-ray, blood work and CT. It is nice to talk to someone who's been through this. My family thinks I worry about this to much. I'm 48. Good Luck!

    Same here
    Don't know if you two are still on the message board, but I'm also interested in seeing how women with uterine leiomyosarcoma are doing. I went in for myoectomy in July 2009 to get my "fibroids" removed. Pretty much shocked everyone when they discovered it was ULMS, as I was only 41 (42 now) and had been perfectly healthy and pretty darn fit up until the 9 months before the surgery (when the crazy bleeding and pain kicked in - don't even get me started on how much my gynecologist completely blew off my symptoms).

    Went to Johns Hopkins where I found a wonderful doc - had a hysterectomy in September. I did not undergo any adjuvant therapy, as the docs at Johns Hopkins didn't see any spread, and said there's no evidence that chemo and/or radiation have any effect on recurrence/survival at that early stage. I'm afraid the stories I'm hearing here aren't making me feel very confident. I go for my three-month scan in December, and am fairly terrified of what the results will be. My family also thinks I worry too much (and I never even talk to them about it). I hope you are doing well!

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