Uterine leiomyosarcoma with lung metastasis: Treatment options?

I have a malignant solitary fibrous tumor in my lung and seeking treatment with dendritic cell therapy at Immunocine . Com. It sounds very promising.

Hi @westerncanuck, I'm tagging a few members like @sarah25 @luna6922 @katie2023, who have experience with metastatic uterine leiomyosarcoma. I also added your post to the Gynecologic Cancers support group along with the Sarcoma support group.

You asked, "Why do I feel fine?" Lung metastases may not cause any symptoms at first. The symptoms vary depending on the number of lesions and where they are in the lungs.

Here is a list of clinical trials at Mayo Clinic for advanced, metastatic, or unresectable uterine leiomyosarcoma https://www.mayo.edu/research/clinical-trials/diseases-conditions/leiomyosarcoma

Many trials are run at multiple cancer centers. Here's another list https://www.clinicaltrials.gov/search?cond=uterine%20leiomyosarcoma

Has a clinical trial been suggested for you by your team? What treatment is being recommended as the next step?

Hello. My uterine leiomyosarcoma was rather advanced when discovered. Operated on and been placed on a schedule for a CT scan every 3-months. Exactly 1 year after my full hysterotomy, it was discovered that it had moved into my left lung. I had been feeling great... no symptoms so was quite shocked with the discovery. I was in surgery 2 weeks later and removed the lower lobe of my lung. I was told there wasn't treatment except removal. The recovery was slow and a little challenging. That has been 2 years ago (October 2024) and remain on 3-month scans. To date - I am happy to report nothing new.
Leiomyosarcoma moves quickly I was told - so happy to always go for the scans to be able to treat quickly if needed.

Thank you good to know a person is not alone in this. They told me surgery is the only great option and they've told me that surgery isn't an option because it's in both lungs all over. I've been given the option to try chemo to abate the sarcoma. I'm going to fight. I wish that there were more promising treatments readily available. Thank you

Yes, absolutely, we need to fight. My husband has been diagnosed with leiomyosarcoma in the duodenum and in the liver about 2 months now. They have done all sorts of scans, biopsies. Yes, he has had a Mugabe scan and is awaiting chemotherapy, they say in about 4 weeks. They say surgery is not an option because the sarcoma has metastasized too much.

@belier3004, I can imagine you are concerned for your husband. What type of chemo will he be getting? How are YOU doing?

The oncologist said that the chemo are 2 types . I did not remember the names. I will try to get the names . Thanks for the question. Good to know.
I am feeling bewildered, shocked at the beginning and I am trying to adjust to my new reality.

I so get.. bewildered and shocked. I have been taking
a friend to most of my appointments. It's been helpful to have someone else to observe, ask, interpret and reflect with -that isn't falling apart..It's helped to calm me. I'll be starting Doxorubicin this week . Stay strong.

Wishing you well today and everyday!! I imagine you've had your first round of chemo and hopefully it went well. My wife was diagnosed with leiomayo almost 2 years ago and was "issue free" until a recent CT discovered an increase in lung nodules. Bronchoscopy is upcoming next month. Hoping for encouraging result, but we're realistic.