Leiomyosarcoma: What can I expect now?

Hello....I know your chemo journey is daunting!! Hopefully you're receiving all the support you need emotionally and physically 💗. While the physical and emotional challenges you're facing are difficult and unpredictble, there is hope, in that the "progression free" period following treatment can last up to 3 years or more....and maybe longer with trabectidin maintenance!! Wishing you more better days than any other on your chemo journey...❤️🌞

More of my journey, I am halfway thru my first cycle of chemo: doxorubicin/Tribectedin. It hasn't been too bad. four days of altered behavior and then back to waiting and dreading what's next. I am back to reading some Kate Bowler"s "everything happens for a reason". Maybe she can get me thru my current funk.

Was diagnosed with Leiomyosarcoma in the fall of 2021… Mass was on the IVC pushing into the liver. Two surgeries later I was NED for 3 years before it matastasized to the lungs. In the last year, I had three sessions of stereotactic radiation on the lungs and radiation on the IVC in a linac machine (mri machine w/ radiation ) . My Oncologists are working toward containment since it will eventually spread to a point where it can’t be treated. Been told that Surgery is the most effective with LMS .

Hi this is Joanne. My primary was on the mysentry and was large and was crushing my small intestine near the connection to the stomach. I was experiencing a bowel obstruction at time of admission. It was an emergency surgery. It was taken out with negative margins but unfortunately it fractured on removal so they had to do a clean out of the debris. I was clear for my post-op scan (60 days after) but my second scan was vague about my liver. I had to have a liver biopsy and am awaiting results. If the LMS is confirmed I will probably start chemotherapy.

Curious about how they removed those nodules from your lungs, like surgery or chemo? And did you have a primary source of LMS somewhere else? I'm halfway through radiation treatments in order to shrink the mass before surgery (3"X3"X2.5") in my pelvis. Pain radiates down my left leg to below my calf muscle.

Hi Joanne...it was outside her uterus and hadn't impacted any other organs. Originally her surgeon suspected it was uterine cancer. My wife discovered it herself and had a ct scan, followed by surgery. Nothing about the tumor was known until the pathology was confirmed. Recent testing showed lung mets after 2 years of ned following her initial surgery. We're hopeful the Votrient will be effective. She has her quarterly visit to Mayo in a few weeks.
Best Regards
Chris

Hi, this is Joanne,
My doctor didn't recommend them. I was familiar with GIST type of sarcoma and they always ask for genomic sequencing so I asked to have it as well And then because their is speculation that my r-LMS could have been from a parasitic fibroid (myeloma) I also asked for receptors identification.
Where was your wife's tumor? Mine generated from the mesentery
https://images.app.goo.gl/AcpjJBCAZFffC63s6
I had one clean scan post surgery and tomorrow I have a liver biopsy to rule out potential liver met.

Hello....
My wife has rLMS and was diagnosed 2 years ago. Had been "ned" until late last year. Now has lung mets. Being treated with Votrient and will rescan early April. Please let me know about genomic and receptor testing. That wasn't mentioned by her Dr.

Stage 4 leiomyosarcoma of the IVC, spread to liver. Diagnosed late June 2024. Had surgery in Sept. So far all scans look good. Feeling great. I’m actually relieved to have scans every 3 months just for my peace of mind. I’ve reached out for some counselling as I feel numb. I don’t cry over things that would normally move me to tears. It’s as if I’ve built a wall to protect myself and it hasn’t come down. Anyone feeling the same?

Blessed o8. :I'm glad we are connecting..
To others with rLMS or uLMS please reach out to us...we are interested to hear your journey. Also interested in your genomic and receptor analysis.