Living with Leiomyosarcoma: Seeking Support During Treatment

Hello

Hey i am a leomyosarcoma patient for the past 2 years .I m on chemo 10 cycles and RT 16 sessions .now on olaperib oral for the past 6 months

I was diagnosed early 2023. It has been a battle with a long chemotherapy treatment. I qualified for a trial but my bloodwork couldn’t support the meds and was finally removed. A new chemo treatment was scheduled and that was the hardest period of my life. Dancin’ with the Red Devil… Reach out if you have any questions!

Call me 704 6342148

I was diagnosed 1/24 and started chemo 7/24. Starting cycle 14 Friday (gemcitabine + docetaxel). Three week cycles of gemcitabine wk1, gemcitabine + docetaxel wk2, off wk3. Had spectral radiation therapy 5 wks ago to treat a 13mm tumor.

I was just diagnosed with leipmyosarcoma. I had surgery to remove it in Late July and was diagnosed a few weeks later. I was told it was very aggressive and that because it was so large 18 cm x15 cm x18 cm and pretty much filled every possible space in my Pelvis . They haven’t figured out where it began because I had a complete hysterectomy over 30 years ago

I was diagnosed with Uterine Leiomyosarcoma on 8/20 and waiting to get a port put in for a tentative chemo start date of 9/10. It has metastasized to my lungs. I was told it is incurable and that the average life span is 1-2 years 😞. I am praying that im not "average" and that I can at least shrink the cancer and keep it at bay for as long as I can. 🙏 Any positive stories from anyone here or any ideas on what I can expect after treatment of Doxorubicin/Tribectaden?

They can’t predict how long you will live, nor how you will respond. Get a second opinion if you can. Doing a biopsy risks spreading the cancer but they need to know which cancer it is before they can treat you. They should monitor with CT scans your lungs, pelvis, and abdomen. I recommend MD Anderson or Memorial Sloan Kettering in NYC. The latter has excellent intake folks who will walk you through every form you need. Spectral radiation (targeting the tumor through a set of lower dose hits that combine to concentrate on the tumor) can treat larger tumors - they try to avoid hitting the same area multiple times if it’s close to your heart, esophagus, or spine. I had four treatments and I have to wait 3 months to find out if it worked on the largest tumor.

Hi Gail, I have been fighting Leiomyosarcoma for 2 1/2 years and am still fighting. I no longer have any evidence of the disease in my lungs but it has metastasized to my spine and right thigh bone. Doxorubicin is nicknamed the red devil. If your doctor has not prescribed a lidocaine in Maalox solution, please ask for it and start drinking it the day you have the infusion. Chew on ice chips before and after the infusion. It hit me hard and in six weeks I went from 219 lbs to 183 lbs because I couldn’t eat or drink anything. I have since been on Tribectaden only and have chemo treatments every three weeks. My PET scans are showing reductions in the size of my tumors but it’s a long battle. Have faith in the treatments because it is the right one! Keep us posted! Charlie

Hi Charlie! Oh thank you so much for reaching out to me and filling me in on your diagnosis/fight. I am so sorry to hear you have been through all this, but so glad to hear the treatments are working for you! I will talk to my Dr about your recommendations! Keep up the fight 💪 Charlie!! I will keep you updated after my first treatment on the 10th. God bless and thank you again Charlie! 😊🙏

Hi P L! I actually had a PET scan and it showed a large 11.9 cm mass in my uterus. They performed a biopsy of a lung nodule and neck nodule and the results came back as Leiomyosarcoma that started in my uterus and spread to my lungs and small lump in my neck. I will be going to Dana Faber in Boston for my 1st treatment, then I will have a consult with another oncologist at Dana Foxboro the 22nd of September. I am going to get an opinion from him as well and receive my future treatments there. 🙏

P L, Sending you positive thoughts for good results! 🙏

For clarification, is that Trabectedin? I tried to search for Tribectaden and could not find it. My docs did not mention this drug as an option.

Yes! I misspelled it! So sorry!

Hello! I was diagnosed April 2025. I had a tumor in my left groin area. After 2 surgeries and radiation, I’m still dealing with complications but trying to be positive.

Hi Lynnessa! Staying positive is half the battle! It is a horrible diagnosis but we are here to support one another. I have been battling my disease for about two and half years now. Surgery in December 2023 to remove half my rib in my back shoulder blade and to this day it still is a dull throb. My diagnosis got more serious not too much longer after that but I’m still fighting. Hang in there! 😊

I did two chemo treatments of red devil. The second one threw me into cardiac arrest. And haven't had any treatment since. But need to find one to do cause the sarcoma is growing back now . Anyone trust the pin point laser radiation

This community has many members who understand the unique challenges that come with leiomyosarcoma treatment, and connecting with others who share similar experiences can provide valuable support and insights. Being early in treatment often brings up many questions and concerns, so this is a great place to find encouragement from others who have walked this path.

Hi, I have rLMS. Starting my chemo today.

Hang in there Audra! You can fight this! Good luck with your chemo sessions and drop back in here to let us know how you are feeling.

Good luck Audra, you got this!

Sending healing energy, Audra! 🙏🏼❤️🙏🏼

I was diagnosed with leiomyosarcoma on my kidney, had surgery in September of 2024. This year in September it had spread to my lungs. They have done targeted radiation to the spots on my lungs. Have to wait 3months to find out if it has helped. They are talking about doing cemo. Im 78 and very frail from this past year, chemo really scares me. Any one my age had this and knows how bad it hits your system.