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Anyone with Retroperitoneal leiomyosarcoma had a genomic analysis?
I was diagnosed with rLMS in October. A 984 gram tumor was removed and damaged to a crushed small intestine was rejected. The tumor was rated as a stage two due to size. No symptoms until it caused a bowel blockage. No weight gain, no pain. Only bloating that started three days before. I have had a genomic analysis but have yet to speak with oncologist about what it means. Looking for others with LMS
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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?
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1 ReactionNot 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.
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2 ReactionsHi
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.
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2 ReactionsHello....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!!
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1 ReactionThank 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!!
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2 ReactionsI hope you saw the helpful reply from @ctflyr.
@juliska32, how are you doing?