Anyone with Retroperitoneal leiomyosarcoma had a genomic analysis?

@blessed08 Hi...thanks for the good wishes. She is a patient at Mayo. She will take Votrient for as long as it's effective. That varies case by case. The good thing is it's not chemo...something we pray she can avoid. My Wife has no cancer in her family, and this appeared out of nowhere with no symptoms except for a noticeable swelling in her abdomen.

Hi everyone I’m new to this support group. But lately, I have been struggling and glad I came across this. Definitely sucks reading all these stories about what we go through but reassuring I am not alone. I’m 39 years old and was diagnosed with leiomyosarcoma I had a 7cm tumor removed from my IVC with positive margins. Did three cycles of AIM, then was NED for about 6 months then on my CT I had a tumor on my liver. Turned out to be 3 when I had my liver resection but good news negative margins. I’m not sure who’s familiar but there is a test called Signatera. It’s new and up and coming so hopefully more and more people can hear about it. It test your blood for you tumors DNA so it’s a good way to tell how your cancer is doing before something even shows up on a scan. Mine is unfortunately going so so I’m getting started on Pazopanib. Hopefully this helps.

@bbbrit86....Hello...my Wife has been using the Signatera test. It's very helpful as an early warning tool. It's good to be mindful of the detection levels and what is indicated, as the test is very sensitive. It also doesnt differentiate and can count "dead cells" that result from treatment.

@colleenyoung I just finished 2nd round of chemo of doxorubicin/ dacarbazine. Nausea managed with Olanzapine & Zofran. Lost all my hair after 3 weeks.
Will have Natera test before 3rd round to see if chemo is effective.

@bbbrit86 Thank you so much for sharing your story. I’m sorry you’re going through this, especially after having surgery and then finding the tumors in your liver. I’m very glad they were able to remove them with negative margins, and I hope you respond well to pazopanib.
Your case caught my attention because my leiomyosarcoma also originated in the IVC. Mine was 6.5 cm and was removed in December 2024. It was grade 2, and the pathology showed a focally positive margin at the vena cava. I did not receive chemotherapy or radiation and have been monitored with CT scans.
If you’re comfortable sharing, I would really like to learn more about your experience. Did your doctors explain why they recommended three cycles of AIM after your first surgery? Was it because of the tumor grade, the positive margin, or another risk factor?
I’m also very interested in Signatera. Did they use tissue from your original tumor to create the test? How often do you have the blood test, and did the Signatera result become positive or start rising before the liver tumors appeared on your CT scan? Did the result influence the decision to start pazopanib, and was the testing covered by insurance?
Finally, did your doctors recommend any lifestyle changes—such as particular guidance about diet, exercise, weight, alcohol, supplements, or anything to avoid? I know these are a lot of questions, so please only answer what you feel comfortable sharing. Thank you again for helping others feel less alone.
Sending warm wishes ❤️

@ctflyr hello, how’s your wife doing?

@blessed08....I wish I could say "cured" or "in remission". She's doing as well as she can under the circumstances, but will need to look at other therapies soon, as her cancer is more active. We hope to avoid chemo if possible. Will discuss options with her Dr.

@ctflyr So sorry to hear that : ( I hope you can find therapies that are effective instead of chemo, that is so hard on the body. Take care

@juliska32 @colleenyoung
Update- Finished four rounds of Doxyrubicin and Dacarbazine- CT scan of chest, abdomen, and pelvis clear on 9/30/26. Last Natera test was still positive but low levels, so will recheck in a few weeks.

@juliska32 .....Hello.....can you explain the choice of Doxyrubicin and Dacarbazine? Info I've read shows Doxyrubicin and Trabectedin is best course. My Wife is fighting leiomyosarcoma and has tried to avoid chemo as long as possible. Right now she's on the max dose of Pazopanib. Will see what results on scans in November. Waiting on Signatera result. Fyi.....Signatera will also detect dead cells in the total shown in results. Sometimes that skews the numbers higher. Best wishes for your continued excellent results!!