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Leiomyosarcoma - Seeking Information

Smsldy
Posts: 2
Joined: May 2011

Three days ago my husband was diagnosed with Leiomyosarcoma. I'm just now getting over the shock that my 39 year old husband has cancer for the second time (he had childhood cancer when he was 13 years old.) I'm been brought to my knees several times by what I have found on the internet. We have two young children, 2 and 5. I need to find hope and information on the best way to see him through this. His tests were done over a week ago and we have an appointment with a Sarcoma Specialist next week. What should we be doing now? Where should we go to for the best information and the best treatment?

Christine Iannuzzo
Posts: 3
Joined: Jan 2011

Smsldy, First and foremost go to a Sarcoma center, Dana Farber,Sloan and there is one in Texas. You don't state where you live however your husband must go to a center for sarcoma.
I was dx with LMS in Feb. 2009. There are many survivors or folks living with cancer. They are not here on line but out living there lives. Please feel free to email me off line.
take care, Christine age 48 Boston Ma.

Smsldy
Posts: 2
Joined: May 2011

We are in Illinois and were just to the University of Chicago and were given the news that he is Stage 4. I can't breathe... where do we go next?

Christine Iannuzzo
Posts: 3
Joined: Jan 2011

Smsldy, How are you doing? Did you get to a sarcoma center. Email me off line. Many of folks live with stage four. Take care try to get to dana farber.

Marisa Castelo
Posts: 3
Joined: Aug 2011

I was diagnosed Feb 2009 - uterine and cervix, surgeries and radiation. now third recurrence and they are trying a targeted chemotherapy pill called SUTEHT prior to a third surgery, typically used for kidney, pancreatic and GIST cancers. I tested for one out of three markers for GIST, so a vague hope that it may shrink the tumour. The side effects were very harsh, and now my thyroid is in need of help.
Also check to see if you test positive for the c-kit, another targeted therapy.

My Dr. said that there was not enough evidence based success with chemotherapy's in preventing recurrence for much longer and I should consider quality of life now.
I read everything I can, and then try to accept, live, and advocate as best I can for me.
Our Drs in Canada seem so over taxed, I feel very alone when in need.
Marisa

Karmaroo
Posts: 2
Joined: Sep 2011

I was diagnosed with LMS in May. I live in Iowa and go to the sarcoma center at the University of Iowa. I was told that LMS is resistive to chemo and radiation. My tumor is resting near the siactic nerve. I went through 25 sessions of radiation and am now in "holding pattern" for my skin to heal. My follow-up Mri shows a drastic reduction in the tumor.. I am scheduled to have surgery on Sept 16th to have my right hamstring/tumor removed. The tumor is inside the hamstring and appears on MRI to be enclosed. I am praying that it has not spread. My oncologist told us that chemo would offer about a 6% advantage and a 30% risk. He did not feel it would "prevent" a spread if that should occur. He told me and my family that if this spreads, it likely would have regardless of chemo. He stated that whatever choice I made would be the right choice and empowered me to make the final decision. The choice easier when he told me if it was him, he wouldn't do the chemo. (he is my oncologist that specializes in Sarcoma. I opted out of chemo as I felt the risk outweighed the advantage.

Hang in there Smsldy. I have an Aunt who was diagnosed with stage IV renial cell carcinmoma. She was in her 70's when diagnosed. Her doctor told the family that she should concentrate on quality of life rather than quantinty. (in other words... do nothing). The family didn't buy into that theory. I am happy to report that my aunt is now 6 years in remission and doing fantastic! Doctors preach based on statistics so I'll leave this post with the wise words of Mark Twain: There are lies, damned lies and statistics. Follow your hearts and make decisions based on what you feel is right for your family. God Bless!

suzanne611
Posts: 3
Joined: May 2011

I have been battling lms since march 2010... yes definately start with a sarcoma specialist to delineate treatment. There are many studies being done to evaluate for effective chemotherapies.
I had a retroperintoneal mass which spread to liver, abdominal wall, spine... well you get the picture. i had 2 surgeries and 8 months of chemo and was told I was "stable' in that the spine lesions were not changed... i had entered the taxotere/gemzar.avastin study under direction of Sloane Kettering. I was felt to be a success but now i have reoccurred in less that 3 months. I had 3 months of feeling great no pain and had an amazing vacation with my son. (14)...
I'm back at it now to get cyberknife for T1 lesions, radiation and then more chemo..
all i can say is hang in there...it sucks!!!!!!

Marisa Castelo
Posts: 3
Joined: Aug 2011

Then I could offer resources and support ideas that I have come across. There is alot to share and offer eachother.

carman22
Posts: 2
Joined: Sep 2011

I too had lei. have been tracking for 5 years, have recently had a high PSA and am worried lei. might be there. Can,t get to chat on CSN(sarcoma) Do you know if I have to install Java script to chat? carman22

harralrw
Posts: 1
Joined: May 2014

Try the Dana-Farber Cancer Institute in Boston, MA, Dr James Butruski (highly respected by people who work with him: Asst Proff at Harvard Medicla School: warm, outgoing, caring physician, patient oriented, 5 out of 5 star rating)

or

M.D. Anderson Cancer Center in Houston, TX Dr. Benjemin (head of Sarcome Unit)

ciera
Posts: 1
Joined: May 2014

Hi, 

I had the same cancer in advace stage and I would love to help you. I'm from Chicago, but saw an AMAZING doctor in Wisconsin. Please message me so that I can give you more personal info. 

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