Anyone had immunotherapy for treating soft tissue sarcoma?

Hi @kenc, I moved your question to the Sarcoma group here: https://connect.mayoclinic.org/group/sarcoma/

I'm also tagging fellow members like @ayjay @marymaurer @sauer01 @ellengrubb @sallymc @liv38556 and others who have had treatments for soft tissue sarcoma.

Ken, how did radiation go? When will you have surgery? Do you know what type of immunotherapy medication is recommended for you?

Thank you

Idk what immunotherapy is yet, but my adult child has a sarcoma tumor in left leg also. Just found out in Dec.2024. Currently taking chemo treatments. Don't know how this can happen to someone who has been extremely healthy, not even a cold. What can I do as a concerned parent ?

I have Epithelioid
AngioSarcoma that started on my head. Took going to 6 different doctors and 15 months to get it diagnosed, Since it’s a rare cancer, I’m going to MD Anderson in Houston now and they confirmed the diagnosis. First seen there in December, 2023. I have had 3 different chemos, currently half way through the fourth one, which is Doxorubicin. (Which was started upon finding the spots on my lungs). I have also had PACLitaxel and Docetaxel. I did have 3 months of immunotherapy - Keytruda, and it did nothing to slow the progression, was growing. (It was after the PACLitaxel). I did feel better during that time, but treatment was not working. I’m told that’s our goal - to slow the progression since there is no cure. I have tumors in my soft tissue on my head, neck lymph nodes are cancerous, and spots on my lungs. I had a PET scan 3 weeks ago and the cancer spots seemed to be smaller. The current plan is to continue 3 more Doxorubicin treatments and see where I stand. All the chemos are brutal, but the immunotherapy didn’t help me. Anyone else have any knowledge of Epithelioid Angiosarcoma and would like to share what worked and didn’t work for you?

This was mentioned as a possible treatment, but then it seemed to have dropped from the discussion. I will bring this up again at my next visit with the Oncologist.

Hi there!
I am currently receiving pembromizulab (abbreviated pembro, but the brand name is Keytruda, an immunotherapy drug originally approved for lung cancer (xcr)) for an undifferentiated polymorphic sarcoma (UPS). It is a stage IIIb, high grade, poorly differentiated soft tissue sarcoma (STS). I go to the UCSF sarcoma medical oncology program. (San Francisco). My oncologist, Varun Monga, is part of a Phase III trial with pembro. The use of pembro for STS is not FDC approved yet as a standard sarcoma treatment, but my insurers (Medicare and Blue Cross of California) approved the special use for me. So far, so good. I have now had 7 treatments since Dec 30, 2024 once every three weeks. 5 more to go. No metastases. (So I don't qualify for the trial, but sarcomas are known for their aggressive ability to metastasize, especially to the lungs.) No side effects for me, although I understand that a common side effect is diarrhea. Better than all your hair falling out, nausea, weakness etc from chemo. Been there, done that 20 years ago for breast xcr. (I'm now 71 yo.) But if you have to go that route, please bear with it. My STS was most likely caused by the radiation therapy I received in 2005--but don't let the radiation therapy you received be a worry. I weighed the risks of having add'l radition this time around and overall, I believe it to be a good route to go in order to eliminate any remaining xcr cells (after surgery) as well as an effective tumor-reducing treatment b4 any surgery or chemo.
If your local oncologist cannot get Keytruda for you, or doesn't believe it is a valid treatment for you, respect his or her opinion, but you can research the NIH for the pembro trial using keywords, or here is a link to the UCSF trial
https://clinicaltrials.ucsf.edu/trial/NCT06422806
Best of everything for you. Feel free to reply with any specific Qs you have. I hope I haven't thrown too much info out there for you. Get used to all the acronyms and abbreviations!

Thank you. I will discuss this the Oncologist.

Hi Quiche....your detailed post is inspiring and helpful, and may give others direction and guidance on their Sarcoma journey! Thanks for your candor and caring!! Wishing you great success with your treatment regimen, and continued strength and support in your Cancer fight...🌞❤️💪

I hope you have done a bit of research on immunotherapy since your last comment. If not, Here's a brief definition from cancer.org:
https://www.cancer.org/cancer/managing-cancer/treatment-types/immunotherapy.html
"Immunotherapy is treatment that uses a person's own immune system to fight cancer. Immunotherapy can boost or change how the immune system works so it can find and attack cancer cells. If your treatment plan includes immunotherapy, knowing how it works and what to expect can often help you prepare for treatment and make informed decisions about your care."

nmd78--I hope you have been able to do some bona fide medical research and have had time to sit with your child's oncologist and ask questions. I especially hope your child is being treated at a sacoma speciality clinic. As your child is an adult, I hope they have also done some research. Although Sarcomas are rare and there is not much information available online, NEVER give up hope.

Agree, important to have an oncologist and supporting medical professionals to develop and provide treatment solutions to the sarcoma cancer.