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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: 4
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. 

Oneinabillion
Posts: 11
Joined: Feb 2013

To anybody  The one thing I was told when diagnoised is call Sloan as I live in NY but the important thing with LMS is that you need a place that has dealt with it.  A sarcoma center is very important.  The ACS has a list at  http://sarcomaalliance.org/sarcoma-centers/     I would try to go to the best one closest to me.  To me the best ones are the ones that have dealt with LMS quite a bit.  You want a Doctor that specializes in LMS.  My understanding is the likelyhood that a cancer doctor at most hospitals probably never saw a case of LMS.  I think there are even doctors at some of the sarcoma centers list that may not have seen a case of LMS.  The hospitals that keep coming up are MD Anderson in Texas, Memorial Sloan Kettering in New York and Dana Farber in Boston.    I'm sure there are many more on the list that are good and maybe because Im on the east coast I heard more about them but I'm pretty sure that the first 2 are pretty much always listed as the first 2 as far as I have seen.  I just recently had my 2 year ct scan and I'm still here after having a large orange (why do they compare tumors to fruit anway) and a kidney removed. Would be interested to hear an updates from anybody.

 

baa
Posts: 1
Joined: Dec 2014

Oct 7th, I had surgery to have a hysterectomy because of a hugh fibroid (12 to 15cm).  A week prior to the surgery a D&C was done to see if the fibroid was normal but they couldn't because the fibroid was covering the uterus.  The day of surgery they tested my fibroid and it was abnormal so they ended up removing the uterus, ovary, and my fallopian tubes. While in the hospital they told my husband and I that I had Stage1A leiomyosarcoma.   Before I left the hosipal I got a full body scan and there was no cancer cell.  But they suggested a preventative measure.  My husband, who is a doctor, agreed with me to do the preventative measure but also phoned MD Anderson Cancer Institute in Houston, TX for a second opinion and they agreed that my doctors were right to suggest the preventative measure.  I have to go through 6 cycles of chemo.  Each cycle is 3 weeks - the first week of the cycle is chemo for 1 day a week - the medication given to me is Gemzar.  The second week is 1 day a week - 2 medications Gemzar and Taxotere.  The third week is no chemo the reason is to let my body rest.   Every week I have blood labs to see results CBS WITH DIFFERENTIAL AND COMPREHENSIVE METABOLIC PROFILE.  So far my labs are normal especially my platelett count. I started chemo the week of Thanksgiving.  The chemo makes me tired for 2 days and I loss all of my hair after 3 weeks. 

kimnmdog
Posts: 4
Joined: Dec 2014

Hi baa:

I hope you are doing OK.  Your story is pretty close to mine.  I am a patient at MD Anderson and did Gemzar and Taxotere in 2009.  I had lots of annoying side effects, but was able to work full time (I am a physician).  I loved my bald head but it did get cold!!  One side effect no one told me about was that your fingernails may become discolored and several of them actually came off.  They grew back.  Get rest when you can.  Play when you feel up to it.  Eat even though it might not taste good. 

My tumor recurred 2 years after finishing my chemo, so my fight continues.  I send you good wishes for a total cure.  Please keep us updated on how you are doing.   Fight on!!!!

woody1022
Posts: 2
Joined: Feb 2015

I was just diagnosed in December 2014.I felt a painful pea sized lump near my right knee & was told it was fatty tissue.After two & a half years I finally had it removed & was told it was a high grade leiomysarcoma tumor.Just had a second surgery one week ago to take out surrounding tissue that may have been contaminated.Still waiting on results.Dr. appointment on February 9 for follow up on surgery.Hope to hear results then.I am absolutely terrified & hoped posting & sharing would help.The tumor was 1 centimeter.Don't know if that is a good thing or not being small.I just want to be able to see my ten year old daughter & two year old grandson grow up.

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