Anyone with Retroperitoneal leiomyosarcoma had a genomic analysis?

I'm tagging @poula @amanzhou who also have experience with retroperitoneal leiomyosarcoma (RLMS) and may have experiences to share.

@jeshaw6801, have you in the meantime discussed the genomic analsis with your oncologist? What did you learn?

Not yet. He was on vacation and I am now on a snowbird getaway to the southwest. I did get a NED on my first scan (Dec 23). I have been spending part of my getaway to reflect on life and death. I want to focus on how to deal with the 90 day cycles between scans When I spoke to the oncologist upon his return, it was brief....discussed first scan and setting up for scan two. We get home on the tenth. Would love to connect rLMS patients.

Hi
I would be very interested in any information or experience about Retroperitoneal leiomysarcoma I live in the UK, and was diagnosed last April when being scanned for PMP....which I also have. I have had the Sarcoma removed when I had my big surgery for the Appendix cancer, hopefully with clear margins, and am now classed as Disease Stable for both cancers. It is so scary having so little information, and I would be grateful to hear how others have progressed with this disease.

Hello....my Wife was diagnosed in Feb 23 and had been NED for nearly 2 years. Early scans showed a few very small lung nodules, which were too small to biopsy. Over time, in late '24 and early '25, a nodule was large enough to test. It was positive for sarcoma...thus the rLMS had metastasized. We opted to put off any drastic chemo and chose a biologic drug Votrient, which has very manageable side effects. Scans continue every 90 days and we hope for "stable disease" or improvement which has shown in recent scans. We hope that continues but understand this cancer isnt predictable. Wishing you well with your diagnosis and treatment! ❤️ Use any and all sources to educate yourself on rLMS and treatment options. Find a sarcoma specialist or sarcoma center near you. Blessings to you on your journey with this illness!!

Thank you for sharing.
I was recently diagnosed amd had surgery for removal of rLMS. There was positve margins, and I’m not a candidate for radiation. Will have my first scans in a few weeks. How is your wife doing with Votrient. Wish you the best. I want to avoid chemo if possible. I look forward to following this group for positive support

@juliska32
Hello.....my Wife has been doing well with Votrient. The main issue she has is with altered taste. She's experienced changes that caused food to taste bitter. Now food has a dull taste. Some foods, mainly fruit are still enjoyable. The other issue is hair thinning. Periodic bowel issues also occur, but are manageable. We're thankful that the Votrient has kept her LMS at bay, though she did have a recent course of radiation for a concerning lymph node. Our goal has been to avoid chemo, and we hope that will be the case. Best wishes for clear scans and NED!!

I hope you saw the helpful reply from @ctflyr.

@juliska32, how are you doing?

@ctflyr hello I just read your message, how is your wife doing? I was diagnosed with rLMS on November 2024, tumor was removed in December 2024, with no further treatment. I have been NED and my next scan is in June. There’s a small nodule on my right lung that’s too small to test. The oncologist keeps saying that it’s not abnormal for people to have small nodules in their lungs but after reading your post, I can’t help but to feel a bit uneasy. How did the treatment work for your wife? Did she have any symptoms related to her lungs prior to the diagnosis? I hope it’s all well and I’m looking forward to hearing from you.

@blessed08 Hello....not trying to be alarming, but my Wife's lung nodules were small...too small to treat or be concerned about...for quite awhile. I believe there were 3 initially shown on CT. They grew slowly however, and were monitored until they enlarged to a size that could be biopsied. She was still NED. By that time there were a number of nodules in different locations. Sarcoma was found in a biopsied nodule, so she started on Votrient. The nodules were "too many" by then to treat other ways. There were no symptoms leading up to the biopsy. We were told prior that the nodules were too small to treat, and they should just be monitored on regular scans. Her experience with Votrient has been good in that it has slowed/stopped nodule growth. That said, each person is unique, and will have their own course and results. If you're fortunate and the nodule you have stays single, you might be able to have it ablated, radiated or surgically removed at the appropriate size. Hope this info helps. Wishing you continued NED!!

Hello again, thanks for your prompt response. I'm glad to hear that the
Votrient is working for your wife. How long will she have to take it, and
is she going to a sarcoma clinic? This is such an uncommon form of cancer,
and not too many studies have been done about it to even know what causes
it. Also, it's rare to find other people who have been diagnosed with it.
My next scan is in June, and I pray and hope that I will continue to be NED.
Please give my regards to your wife, I wish her well.

Take care!