Leiomyosarcoma - Seeking Information

Leiomyosarcoma
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.

hey
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!!!!!!

Christine Iannuzzo said:

Leiomyosarcoma
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.

HI all
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

Smsldy said:

We are in Illinois and were
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?

Iowa
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!

Try the Dana-Farber Cancer

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 said:

I had Leiomyosarcoma

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. 

sarcoma centers

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 said:

leiomyosarcoma

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. 

been there too

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!!!!

I'm still alive you bstards

Quoting from the movie Pappion seemed appropriate. I'm still here. If you look back I had LMS back in 2012 and it's 2021 now so just wanted to let people know that. I had a 10cm tumor in my perineal cavity that was removed along with one kidney. Although I did have a recorance in my chest area in 2018 it was small being that I get ct scans every year (just got off the semi annual plan) and they removed that. The bad news of course was Being that it came back it made it a lot more likely it will come back again but the not as bad news is being that it took 6 years to come back and was only about 1 cm means it's relatively slow growing and can hopefully be removed if and when it does come back again. Back to every 4 month scans. My heart goes out to those of you that haven't had as good of results as I had so far. We are all on a time schedule we just don't know what it is so all I can say is do your best to try to get some enjoyment with whatever time we are on this earth. Sorry for the pop psychology but what else is there reAlly. Love to all and as my father used to say when he was alive "I have to get well to be well"

In the battle

I was first diagnosed in fall 2018 when a tiny tumor was found in the uterus after a complete hysterectomy. That doc was not a sarcoma specialist and said 6 mos CT scans were all the follow-up needed. Cancer recurred by December 2019 with 3 small tumors. I quickly had surgery to remove them. I finally started researching this cancer and realized the doc I had was not a good fit since she has never seen a case of LMS before. I switched to the head of the sarcoma center at Ohio State University's The James cancer hospital. Dr. Chen trained at MD Anderson. He currently has 5 other patients with LMS besides me. He insisted on genetic testing of the tumors, started me on an estrogen blocker, and scheduled CT scans every 3 months. We have full confidence in him and his team.

In  November 2020 the scans were clear. In February 2021, my abdomen was full of tumors.  3 were quite large and growing aggressively. I tried a clinical trial which did nothing, then switched to Gem-Tax for 5 cycles. Tumors finally shrunk enough that I could have surgery on August 10th. The tumors were soccer ball sized, cantaloupe sized, and softball sized plus a bunch of smaller ones!! No wonder I was bloated and in pain!! Surgeon and oncologist believe all visible cancer was removed but because of my history, tomorrow I start maintenance chemo every other week. Hopefully it will kill any further cancer cells or at least slow them way down! I'm hoping for at least a year before next recurrence. Longer would be fabulous. Shorter would be disappointing.

I HATE knowing my time here is limited. I'm currently grieving the things I likely won't be here long enough to see--even while fighting for extended time!