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What are the treatment options for metastatic leiomyosarcoma?
I am writing to this group to find out if there is a chemotherapy that
can help with metastatic leiomyosarcoma. I am not naive, and I am writing because this affects my wife. She is 57 years old and already had leiomyosarcoma on one kidney in 2008. They removed the kidney. She then underwent chemotherapy and radiation. In 2022, it returned. Since then, she has been battling metastases in her liver and lungs. We have had several operations.
Since last week, she has new metastases in her neck, adrenal gland, and something on the outside of her pancreas, as well as a mass on her forearm and thigh. Acutely, a newly formed tumor in front of the entrance to the lung appears to be pressing on the main bronchus from the outside. These metastases have grown over the last 3 months. Now the doctors want to try the 2022 chemo with doxorubicin and dacarbazine again.
We live in Germany and are slowly despairing. Perhaps there is a new chemo or treatment that can help.
THX for reading with love, prays and hope fore all of you
Michel
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Hello Michel....
I'm so very sorry for the circumstances your Wife and you are enduring!! The battle she and you are fighting is complicated and difficult! Sadly, options may be limited. The latest "successful" chemotherapy for LMS is Doxorubicin and Trabectedin. Maybe your Wife's doctors can consider that. It may be too difficult in terms of side effects given your Wife's condition. There is an oral chemo Temozolomide, but may not be strong enough for this circumstance. There is information regarding a combination therapy using Temozolomide and Oloparib. Also a chemo combination of Gemcitabine and Docetaxel. I hope you can find the help, support and answers you and your Wife need at this difficult time. Blessings to you and your Wife...❤️
Michel....I have attached a published study of a patient with advanced metastatic LMS who was given a treatment which was successful after numerous other therapies. Maybe it cn be a guide for you.
fonc-15-1626478 (fonc-15-1626478.pdf)
@ctflyr thank you so much!
@vipmikee, in addition to the helpful information you got from @ctflyr, you might also be interested in this related discussion.
- Uterine leiomyosarcoma with lung metastasis: Treatment options?https://connect.mayoclinic.org/discussion/uterine-leiomyosarcoma-lung-metastasis-treatment-options/
Have you and your wife inquired about clinical trials for which she might be eligible?
Here is a listing of clinical trials for leiomyosarcoma at Mayo Clinic
https://www.mayo.edu/research/clinical-trials/diseases-conditions/leiomyosarcoma
It can be hard to know whether she may be eligible for a clinical trial or not. To learn more, you can ask your wife's oncologist about clinical trial availability or call Mayo Clinic to speak with a study coordinator.
Cancer-related clinical studies questions
Phone: 855-776-0015 (toll-free)
International patient clinical studies questions
Phone: 507-284-8884
Email: intl.mcr@mayo.eduI
Has she started chemo again? How are you both doing?
I was diagnosed with Leomyosarcoma 4 1/2 years ago. I’ve had two surgeries stereotactic radiation about six times. Two years ago it metastasized to my lungs then a year ago, to my bones. It started in my IVC vein over the abdomen. I was told in the beginning that chemo does not work on LMS and that surgery and radiation were the best options..
my last scan it metastasized to my pelvis and pancreas my oncologist suggested gemcitabine, which has had some success for LMS patients. It’s given intravenously three times a month in the hospital I’m very leery of any chemo so this is very hard for me. Trying to decide whether to do nothing and shorten my life or live with nausea, dizziness, etc.. The doctor says things will get really bad because the pancreas can cause chaos in your digestive system. Feels like I’ll never be able to stop thinking about this disease even though I want to getting tired and almost ready for it to be over.
I wish you luck and can totally empathize with what you’re going through. It’s a very difficult cancer. I send you my best for Massachusetts.🩷
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Hello.....hopefully you may have some more information regarding therapy choices for your condition. While chemo is a difficult regimen, it may offer some longer term relief, despite the side effects. It's a tough choice to make. Doxorubicin+ Trabectedin has shown some longer term effectiveness for metastatic LMS. A non-chemo alternative is Votrient, an oral non-chemo med taken once a day that inhibits tumor proteins and blood supply. Sadly, there are no easy answers for this cancer. Hopefully, you can find yours with support from loved ones and your care team. Best wishes to you in your health journey....❤️🌞