Leiomyosrcoma
Comments
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Leiomyo sarcomereneekarin1969 said:HELLO SELENA,
MY NAME IS RENEE AND I LIVE IN FLORIDA. ON DEC.30,1997 I HAD A 15# TUMOR REMOVED FROM MY ABDOMEN IN JANUARY 1998 I WAS DIAGNOSED WITH A LEIOMYOSRCOMA. I WENT THROUGH CHEMO AND RADIATION AND HAVE BEEN CANCER FREE FOR 2 1/2 YEARS. THE CANCER RETURNED IN MY LUNGS AND I JUST RECENTLY HAD AN OPERATION TO REMOVE THE LEISIONS FROM THE RIGHT SIDE OF MY LUNG AND I AM GOING TO HAVE ANOTHER ONE SOON TO REMOVE THE LEISIONS FROM THE LEFT SIDE. I HOPE THIS HELPS YOU
SIGNED, RENEE
Hi Renee and all of you who have this insidious disease. I live in New zealand. I was diagnosed in October 2007 after a tumour in my jujenum, small bowel, burst leading to emergency surgery and the finding of the leiomyosarcoma. I was lucky in a way that the tumour could only get to a certain size before it caused problems, however 6monthly ct scans followed and recurrences have occurred both times since then. In May I am to have my third laparotomy and also a second hernia repair done. result of abdominal wall weakness, common after surgery. I have been told there is no spread it is still localised. The problem I have is that my surgeon, who is fantastic, has said that surgery is the only option for me and yet I see so many of you are having chemO and radiation offered and other drugs mentioned as well.
aRE WE BEHIND THE TIMES HERE? I have been told it is unresponsive to both radiation and chemo.
Good luck to all of you out there.
Anne0 -
leomayosarcoma on liver
hi, my name is mario and live in Australia.
My wife was diagnosed with Lms.in 2004 so far she has been treated with Dexo.and texo.Mary has alump on her liver 14cm.in diamiter Dexo. help reduce the size to 4cm but now it is back to 14cm.so far Mary has had 6 shots of texo.and will have a ct scan next week, hoping for a sign of improvnemt, so more treatment will be given. Well at least she has not expierienced no pain and doing much better than what the doctors predicted. when diagnosed Mary was given 3 months to live 5 years down the track she is still going strong.
I would like to ask .Does any one know of any other treatment beeing used
if so please tell me
Thanks for all your support
Keep praying it all helps
Cheers
Mario0 -
leiomyosarcoma in lungs onlymmzamm said:leomayosarcoma on liver
hi, my name is mario and live in Australia.
My wife was diagnosed with Lms.in 2004 so far she has been treated with Dexo.and texo.Mary has alump on her liver 14cm.in diamiter Dexo. help reduce the size to 4cm but now it is back to 14cm.so far Mary has had 6 shots of texo.and will have a ct scan next week, hoping for a sign of improvnemt, so more treatment will be given. Well at least she has not expierienced no pain and doing much better than what the doctors predicted. when diagnosed Mary was given 3 months to live 5 years down the track she is still going strong.
I would like to ask .Does any one know of any other treatment beeing used
if so please tell me
Thanks for all your support
Keep praying it all helps
Cheers
Mario
My brother in law was dx with Leiomyosarcoma 18 months ago. He has been to Germany for laser metastectomy and has increase in size and number of tumors in his left lung. We are currently investigating a trial of cytoxan and everolimus which works on stopping blood flow to the tumors(antiangiogenesis). We had his tumors profiled to see what they might be receptive to as far as treatment. There are two companies that do this treatment that I have experience with. One is TMD(targeted molecular diagnostics) and Clarient. We are utilizing this information to start therapies. Also, metronomic chemotherapy which is low dose chemo is another avenue.0 -
hi my name is sheliasarcomasister said:leiomyosarcoma in lungs only
My brother in law was dx with Leiomyosarcoma 18 months ago. He has been to Germany for laser metastectomy and has increase in size and number of tumors in his left lung. We are currently investigating a trial of cytoxan and everolimus which works on stopping blood flow to the tumors(antiangiogenesis). We had his tumors profiled to see what they might be receptive to as far as treatment. There are two companies that do this treatment that I have experience with. One is TMD(targeted molecular diagnostics) and Clarient. We are utilizing this information to start therapies. Also, metronomic chemotherapy which is low dose chemo is another avenue.
I was dig, in july 2007 ulms after surgery n june 2007. I ran across this site while researching more.looking at the dates i wonderd if there would be ne recent inquires, How is ur brother? I have done well untill recently. I am on my way to duke onc to see if the cancer has reoccured. would love to chat with any one who is experiencing lms or has a loved one enduring this feel free to contact me via E mail sheshe071@yahoo.com0 -
How are u doing ?myleio said:Leiomyo sarcome
Hi Renee and all of you who have this insidious disease. I live in New zealand. I was diagnosed in October 2007 after a tumour in my jujenum, small bowel, burst leading to emergency surgery and the finding of the leiomyosarcoma. I was lucky in a way that the tumour could only get to a certain size before it caused problems, however 6monthly ct scans followed and recurrences have occurred both times since then. In May I am to have my third laparotomy and also a second hernia repair done. result of abdominal wall weakness, common after surgery. I have been told there is no spread it is still localised. The problem I have is that my surgeon, who is fantastic, has said that surgery is the only option for me and yet I see so many of you are having chemO and radiation offered and other drugs mentioned as well.
aRE WE BEHIND THE TIMES HERE? I have been told it is unresponsive to both radiation and chemo.
Good luck to all of you out there.
Anne
My name is shelia I was diagnosed in july 2007. I wonder if u could tell me what ur symtoms where. I have recently began to feel sick again and am going to Duke unv latter this month to get pet cts to see if the cancer is back. I never recieved ne kind of treatment before and that is my biggest fear is the surgery and the treatment surgery was so hard to recover from two years ago and when i thought things where getting better i begam to feel ill again. wondering if ne one has ne input on symptoms and what to expect if i have a reoccurance . My prayers are with all of u God bless and heal u .0 -
ulmssheliar2007 said:hi my name is shelia
I was dig, in july 2007 ulms after surgery n june 2007. I ran across this site while researching more.looking at the dates i wonderd if there would be ne recent inquires, How is ur brother? I have done well untill recently. I am on my way to duke onc to see if the cancer has reoccured. would love to chat with any one who is experiencing lms or has a loved one enduring this feel free to contact me via E mail sheshe071@yahoo.com
place Hi i was diagnosed with ulms when i was 28 and i am now 30 it all started while i was pregnant they found something growing in me and no one figured out it was cancer until 6 months after the baby the drs did not do there follow ups like they were supposed to so when they did find it i was at stage4 and it mets to my lung i did do some chemo but never got to finish treatment and i did have a lung resection which they found that the chemo killed the cells after two rounds of chemo, it is now in my other lung and maybe in my spine!!! wheres the best hospitals to be at and is there any new treatments anyone experienceing ulms plz email me danielleluvsjames4ever@yahoo.com0 -
try mdaJadan said:ulms
place Hi i was diagnosed with ulms when i was 28 and i am now 30 it all started while i was pregnant they found something growing in me and no one figured out it was cancer until 6 months after the baby the drs did not do there follow ups like they were supposed to so when they did find it i was at stage4 and it mets to my lung i did do some chemo but never got to finish treatment and i did have a lung resection which they found that the chemo killed the cells after two rounds of chemo, it is now in my other lung and maybe in my spine!!! wheres the best hospitals to be at and is there any new treatments anyone experienceing ulms plz email me danielleluvsjames4ever@yahoo.com
i would try md anderson in houston - they have a sarcoma center - suppose to be one of the best0 -
ulmscatbird said:try mda
i would try md anderson in houston - they have a sarcoma center - suppose to be one of the best
I was diagnosed with leiomyosarcoma on November 19, 2008. I, too, heard Houston has an excellent sarcoma center. So does University of Michigan. I was treated for uterine leiomyosarcoma at Cleveland Clinic. I did go to UofM for a second opinion. They agreed with the chemo CC was doing but suggested radiation. CC did not think I needed radiation so I went to University Hospitals of Cleveland as my friend had recently had uterine cancer and had brachytherapy. So I had bracytherapy at UH. I was only able to complete half of the recommended six rounds of chemo and felt I needed to do something more.
My CC doctor consulted John Hopkins through the Internet a few times. I was surprised at that. Leiomyosarcome is rather rare and there are no studies or statistics on it.
May I suggest that you eliminate dairy from your diet as it encourages rapid cell growth. I am drinking Rice Dream organic rice milk. It isn't bad on cereal. Also, eat as little meat as possible and fill up on fruits, vegetables, whole grains, and legumes. I bought a book written by a doctor and nutritionist called "The Cancer Survivor's Guide." It explains why you should eat this way and has recipes. www.bookpubco.com or 800-695-2241. It's $19.95 plus shipping. CC has a great support program and I learned that they give this book out if you ask for it. It's worth a try to complement the recommended therapies.
My prayers and best wishes go out to you.0 -
correction to ulms postEvelyn G said:ulms
I was diagnosed with leiomyosarcoma on November 19, 2008. I, too, heard Houston has an excellent sarcoma center. So does University of Michigan. I was treated for uterine leiomyosarcoma at Cleveland Clinic. I did go to UofM for a second opinion. They agreed with the chemo CC was doing but suggested radiation. CC did not think I needed radiation so I went to University Hospitals of Cleveland as my friend had recently had uterine cancer and had brachytherapy. So I had bracytherapy at UH. I was only able to complete half of the recommended six rounds of chemo and felt I needed to do something more.
My CC doctor consulted John Hopkins through the Internet a few times. I was surprised at that. Leiomyosarcome is rather rare and there are no studies or statistics on it.
May I suggest that you eliminate dairy from your diet as it encourages rapid cell growth. I am drinking Rice Dream organic rice milk. It isn't bad on cereal. Also, eat as little meat as possible and fill up on fruits, vegetables, whole grains, and legumes. I bought a book written by a doctor and nutritionist called "The Cancer Survivor's Guide." It explains why you should eat this way and has recipes. www.bookpubco.com or 800-695-2241. It's $19.95 plus shipping. CC has a great support program and I learned that they give this book out if you ask for it. It's worth a try to complement the recommended therapies.
My prayers and best wishes go out to you.
My doctor consulted Sloan Kettering on the web--not John Hopkins as I posted yesterday.0 -
Sloan Kettering information page on lieomyosarsomaEvelyn G said:correction to ulms post
My doctor consulted Sloan Kettering on the web--not John Hopkins as I posted yesterday.
This page is very informative.
http://www.cancer.gov/cancertopics/pdq/treatment/uterinesarcoma/patient0 -
ulmsEvelyn G said:ulms
I was diagnosed with leiomyosarcoma on November 19, 2008. I, too, heard Houston has an excellent sarcoma center. So does University of Michigan. I was treated for uterine leiomyosarcoma at Cleveland Clinic. I did go to UofM for a second opinion. They agreed with the chemo CC was doing but suggested radiation. CC did not think I needed radiation so I went to University Hospitals of Cleveland as my friend had recently had uterine cancer and had brachytherapy. So I had bracytherapy at UH. I was only able to complete half of the recommended six rounds of chemo and felt I needed to do something more.
My CC doctor consulted John Hopkins through the Internet a few times. I was surprised at that. Leiomyosarcome is rather rare and there are no studies or statistics on it.
May I suggest that you eliminate dairy from your diet as it encourages rapid cell growth. I am drinking Rice Dream organic rice milk. It isn't bad on cereal. Also, eat as little meat as possible and fill up on fruits, vegetables, whole grains, and legumes. I bought a book written by a doctor and nutritionist called "The Cancer Survivor's Guide." It explains why you should eat this way and has recipes. www.bookpubco.com or 800-695-2241. It's $19.95 plus shipping. CC has a great support program and I learned that they give this book out if you ask for it. It's worth a try to complement the recommended therapies.
My prayers and best wishes go out to you.
my girlfriend was diagnosed with uterine lms it has metast to her lungs and she has a mass on her pubic bone which it fractured it seems to be very advanced she also has a lot of bleeding they tell us surgery is not an option and chemo may buy us a bit more time is all we have changed her diet and if anyone has any helpful hints it would be greatly appreciated thank you and god bless0 -
ulmsJadan said:ulms
place Hi i was diagnosed with ulms when i was 28 and i am now 30 it all started while i was pregnant they found something growing in me and no one figured out it was cancer until 6 months after the baby the drs did not do there follow ups like they were supposed to so when they did find it i was at stage4 and it mets to my lung i did do some chemo but never got to finish treatment and i did have a lung resection which they found that the chemo killed the cells after two rounds of chemo, it is now in my other lung and maybe in my spine!!! wheres the best hospitals to be at and is there any new treatments anyone experienceing ulms plz email me danielleluvsjames4ever@yahoo.com
On Dec 1, 2009, during a hysterectomy due to uterine fibroids. they removed the uterus, ovaries, and fallopian tubes. The LMS had become so large that it infected the right ovary and fallopian tube. The fallopian tube had even become attached to the bowel. After surgery, the did a CT and coudl not find any other signs of LMS in any other organs. however, they are now recommending chemotherapy using a combination of gemzar and taxotere. I am trying to do some research, however, most of what I have found is pretty grim. Survival rate seems low and there does not seem to be much evidence of chemotherapy extending survival rate or lowering reoccurance. I noticed there had only been one posting in 2009. Is this sight still active? Those of you who posted in 2005 - what about your prognosis since 2005?0 -
see other lms a few lines below this groupcpritch227 said:ulms
On Dec 1, 2009, during a hysterectomy due to uterine fibroids. they removed the uterus, ovaries, and fallopian tubes. The LMS had become so large that it infected the right ovary and fallopian tube. The fallopian tube had even become attached to the bowel. After surgery, the did a CT and coudl not find any other signs of LMS in any other organs. however, they are now recommending chemotherapy using a combination of gemzar and taxotere. I am trying to do some research, however, most of what I have found is pretty grim. Survival rate seems low and there does not seem to be much evidence of chemotherapy extending survival rate or lowering reoccurance. I noticed there had only been one posting in 2009. Is this sight still active? Those of you who posted in 2005 - what about your prognosis since 2005?
the other lms a few lines below this gruoping has lms info provided by sharon - a site to join etc - it has lots of info
see "sarcoma" survivors
mda in houston is a good sarcoma center
i am in my 6th round of gem + tax for lms dig 8/090 -
Leiomyosarcomacpritch227 said:ulms
On Dec 1, 2009, during a hysterectomy due to uterine fibroids. they removed the uterus, ovaries, and fallopian tubes. The LMS had become so large that it infected the right ovary and fallopian tube. The fallopian tube had even become attached to the bowel. After surgery, the did a CT and coudl not find any other signs of LMS in any other organs. however, they are now recommending chemotherapy using a combination of gemzar and taxotere. I am trying to do some research, however, most of what I have found is pretty grim. Survival rate seems low and there does not seem to be much evidence of chemotherapy extending survival rate or lowering reoccurance. I noticed there had only been one posting in 2009. Is this sight still active? Those of you who posted in 2005 - what about your prognosis since 2005?
cpritch227- I was diagnosed with Stage IV Leiomyosarcoma of the uterus. Prognosis at the time was a 20% chance to live another 3 weeks to 5 years. This May will be five years.
The first round of chemo was the gemzar/taxotere, as was the second. Right now I am on Doxil and the last scan was clean. So chemo does indeed help as well as the right surgeon.
When I first read everything I could get my hands on I also thought "Grim". It isn't. The quality of life may not be the same, but hope, love and faith will pull you through.0 -
How are you doing with thecatbird said:see other lms a few lines below this group
the other lms a few lines below this gruoping has lms info provided by sharon - a site to join etc - it has lots of info
see "sarcoma" survivors
mda in houston is a good sarcoma center
i am in my 6th round of gem + tax for lms dig 8/09
How are you doing with the treatment. What side affects did you incurr. I will be starting gem + tax next Week. I have mets to lungs and liver and few other spots. Trying to stay positive.0 -
My wife is presently in thessastar said:ulms
my girlfriend was diagnosed with uterine lms it has metast to her lungs and she has a mass on her pubic bone which it fractured it seems to be very advanced she also has a lot of bleeding they tell us surgery is not an option and chemo may buy us a bit more time is all we have changed her diet and if anyone has any helpful hints it would be greatly appreciated thank you and god bless
My wife is presently in the same situation. This all started in January of 2008 when her gyno doc told her that she had an enlarged uterus. He told her that surgery was optional. It got so bad by June of 2008 that they decided to do a complete hystorectomy. After surgery we were told that there was some dead tissue, however not to worry because they were 99.9% sure that it was fine. He told us 4 days later that she had ULMS.
They were going to start pelvic radiation when they discovered in a CT scan that it was in her lungs and lymph nodes in her pelvic area. They put her on Chemo (Gemzar and Taxotere) till april of 2009. They gave us the news that they were pulling her off because there were no more signs of it. She had several side effects from the chemo and gutted her way through it.
In July of 2009, she passed out at a wedding before the bride and groom came out. She was transported to the hospital with a diagnosis of (drank too much). Note: She was not even drinking! After 5 hours of fighting with doctors, they finally discovered through a CT scan that she had a brain tumor that started bleeding. It was in the cerebelum and about the size of an egg! They removed it and she spent 27 days in the hospital learning to read and write again. She made a miracle recovery and had good scans until yesterday.
She had to go back in because she had a lot of discomfort in her vulvar area. For weeks they were saying that it was very common symptomatic for post hystorectomy. Last week during examination, they felt a tumor under her skin in the vulvar area. The scans showed a massive growth growing under and around her pelvic bone.
She is presently going to have more scans of her brain and lungs to see if it is re-occuring in those areas. It does not sound like they can operate because of the location of the tumor. I am not sure what they will decide this week, however it is not good!
From my heart, I continue to pray, however I know this is not good! We will continue to live our lives today. She and I will get through our day together!
God Bless all of you that have to go through this horrible disease!0 -
san 1021511 - on gem/taxsan1021511 said:How are you doing with the
How are you doing with the treatment. What side affects did you incurr. I will be starting gem + tax next Week. I have mets to lungs and liver and few other spots. Trying to stay positive.
i have been lucky doing well w/the treatment. I have not been sick at all but they give me several anti nausea medicines before they start the chemo. i do get constipated - take stool softners at the start of the chemo then it goes away. I did have some swelling & weight gain from the steroids but that has gone away too. I am working a full week & tired at nite then about 48 hrs after the chemo i'm really tired for about 24 hrs so i get chemo on thursdays. my chemo is 90 min gem 1 week then 90 min gem & 60 min tax & a shot the next week then the next week i'm off so about a 2 week break. I have completed 6 rounds & start another one this week. I had a port put in to make it easier. how many minutes are you getting etc of this chemo?0 -
National Leiomyosarcoma Foundationmyleio said:Leiomyo sarcome
Hi Renee and all of you who have this insidious disease. I live in New zealand. I was diagnosed in October 2007 after a tumour in my jujenum, small bowel, burst leading to emergency surgery and the finding of the leiomyosarcoma. I was lucky in a way that the tumour could only get to a certain size before it caused problems, however 6monthly ct scans followed and recurrences have occurred both times since then. In May I am to have my third laparotomy and also a second hernia repair done. result of abdominal wall weakness, common after surgery. I have been told there is no spread it is still localised. The problem I have is that my surgeon, who is fantastic, has said that surgery is the only option for me and yet I see so many of you are having chemO and radiation offered and other drugs mentioned as well.
aRE WE BEHIND THE TIMES HERE? I have been told it is unresponsive to both radiation and chemo.
Good luck to all of you out there.
Anne
You can find lots of info there...0 -
Hi Bella,Bella29 said:Leiomyosarcoma
cpritch227- I was diagnosed with Stage IV Leiomyosarcoma of the uterus. Prognosis at the time was a 20% chance to live another 3 weeks to 5 years. This May will be five years.
The first round of chemo was the gemzar/taxotere, as was the second. Right now I am on Doxil and the last scan was clean. So chemo does indeed help as well as the right surgeon.
When I first read everything I could get my hands on I also thought "Grim". It isn't. The quality of life may not be the same, but hope, love and faith will pull you through.
I'm so glad, it
Hi Bella,
I'm so glad, it gives me hope. I too have leiomyosarcoma. I was diagnosed nov. 08, did chemo and radiation and the cancer is now back in my lungs. Will try chemo again.
Love, to hear from you since you are doing so well. Is Doxil a new chemo drug ?
Love to hear from you.0 -
leiomysarcomasandrajean said:Greetings Renee: I live in Alaska & was diagnosed with leimyosarcoma in May,2001.The surgery was successful as future CT's and MRI are clear.I chose not to do chemo/radiation and now doing alternative medicine.Do you use alternative medicine as well? What type and kind. Thanks. I'll keep you in my prayers.
Hello sandrajean,
How are you doing ? I have been diagnosed with leiomyosarcoma in nov,08. The cancer is back, did the alternative medicine work.
Let me know,0
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