Leiomyosrcoma

reneekarin1969 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

mmzamm 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

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

Jadan 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

Evelyn 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.

Evelyn 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.

cpritch227 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?

catbird 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

san1021511 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.

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.