Anyone had immunotherapy for treating soft tissue sarcoma?

Posted by kenc @kenc, Feb 20, 2025

I have soft tissue sarcoma cancer in my left thigh. Competed radiation therapy, now scheduled for surgery. The oncologist said my age limits my ability for chemotherapy, the surgeon said there is evidence of for good recovery result from immunotherapy. The oncologist first said is an avenue for treatment and said perhaps not, because she believes I have an autoimmune deficiency, because of the Colitis disease I had and was treated via surgery over a decade ago. The colorectal surgeon said no, the intestines were removed and no autoimmune disease exists from that ailment. Has anyone had experience with using the immunotherapy for treating sarcoma cancer?

Interested in more discussions like this? Go to the Sarcoma Support Group.

It took 16 months and 6 doctors to diagnose my Epithelioid Angiosarcoma-started in the head. It’s a cancer of the lining of the blood vessels. Since being diagnosed I’m on the 4th. Chemo type, and it’s been one and a half years of treatments, including immunotherapy. I did do Immunotherapy (Keytruda) for 3 months, but it unfortunately did nothing for me and was not slowing the progression. Everyone responds differently, and there are so many types of sarcomas.
Prayers for you in your journey that your oncologist finds the best treatment that works for you.

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Profile picture for ctflyr @ctflyr

Hello jreed117....
I'm not sure of you background, but unless you're a cancer doctor, your 6 months of research does not give you the authority to say..."unfortunately your life expectancy is minimal at best..."!! I would say that "opinion" does a disservice to the poster you're replying to. I believe there's hope with any cancer treatment and many success stories!

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Totally agree with you ctflyr
What a negative and incorrect comment!!

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Hello
I didn't express myself clearly enough.
I am diagnosed with classical HIV negative Kaposi sarcoma with lesions only on the skin of the foot, meaning there are some colored spots on the sole of the foot and on the toes. I don't know if I can post photos here. There is no other organ affected, but I would like to know more about immune treatment or other treatment. At the moment I am only taking 3 months in the summer.

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I wrote it wrong. At the moment I only take 3 months in the spring and 3 months in the fall.

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I had a large chondro sarcoma removed from my pelvis 10 years ago. A further tumour in the same place was removed 3 months ago

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Profile picture for sharonlynn51 @sharonlynn51

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?

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My son was diagnosed with epithelioid sarcoma in August 2025. The primary tumor was located in his foot, and he had two metastatic lesions in his leg. He completed six cycles of chemotherapy, which reduced the primary tumor by 60% and led to the disappearance of the metastatic lesions.

Given this positive response, the medical team has proposed performing an isolated limb perfusion procedure. This is an extracorporeal technique in which high-dose chemotherapy is delivered directly to the affected limb in order to eliminate or significantly reduce the primary tumor, while minimizing systemic exposure.

At the same time, he will begin treatment with Tazemetostat, a targeted therapy specifically approved for epithelioid sarcoma, which is manufactured in the United States.

It seems that you’ve been going through this for a longer time — I truly hope everything is going well.

Sending you my best regards.

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Profile picture for mariagonzb43 @mariagonzb43

My son was diagnosed with epithelioid sarcoma in August 2025. The primary tumor was located in his foot, and he had two metastatic lesions in his leg. He completed six cycles of chemotherapy, which reduced the primary tumor by 60% and led to the disappearance of the metastatic lesions.

Given this positive response, the medical team has proposed performing an isolated limb perfusion procedure. This is an extracorporeal technique in which high-dose chemotherapy is delivered directly to the affected limb in order to eliminate or significantly reduce the primary tumor, while minimizing systemic exposure.

At the same time, he will begin treatment with Tazemetostat, a targeted therapy specifically approved for epithelioid sarcoma, which is manufactured in the United States.

It seems that you’ve been going through this for a longer time — I truly hope everything is going well.

Sending you my best regards.

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He also received doxorubicin as part of his treatment.

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I had my 5th treatment yesterday of doxorubicin and Keytruda. Last summer, I had radiation and surgery to remove the myxofibrosarcoma on my hip. They thought it was removed encapsulated with clear margins. However, it showed up again in my lungs at the 3 month check. With the current treatments, most of the tumors in the lungs have shown some shrinkage while one tumor grew slightly since the last scan. I feel better and can breathe easier. Hope this helps.

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Your experience is very similar to mine with similar results.

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Profile picture for quichewithmayo @quichewithmayo

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!

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@quichewithmayo
Hi there. I was diagnosed with stage 3 indifferentiated pleomorphic sarcoma. Have had consults at UCDavis, UCSF (Dr. Monga & Dr. Murray - surgeon). Last consult scheduled at Stanford next week. Before we knew the exact type, both institutions recommended 5 weeks radiation, 1 month to heal, followed by surgery. Following further pathology, Dr. Monga now recommends immunotherapy for 1 year. I am close to your age - 69. Was the only side effect you had diarrhea, as I can handle that. It’s the risks to thyroid etc etc that concerns me. Any thoughts?

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