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Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

Posted by me67 @me67, Mar 3, 2017

I have been diagnosed with pleomorphic sarcoma. Is there anyone on this site that has had this cancer or has it now? I would like to talk to you. Thank you

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gemmalt | @gemmalt | Jul 19 12:47pm
In reply to @4mysis0617 "My sister was just diagnosed with stage 4 UPS, has anyone gotten to that stage on..." + (show)
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My sister was just diagnosed with stage 4 UPS, has anyone gotten to that stage on here? What were your treatment options?

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My Dad is Stage 4, had UPS with lung mets - he found Trabectadin has held back the lung mets for over 2 years

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quichewithmayo | @quichewithmayo | Jul 21 3:06pm
In reply to @nooneknows "Diagnosed almost 5 years ago and told it was rare and incurable. Tumor was in my..." + (show)
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Diagnosed almost 5 years ago and told it was rare and incurable. Tumor was in my thigh, barely visible bulge with no pain, small metastasized lesion on my lung. Happy to tell you that it has shrunk by 70%, after chemotherapy and immunotherapy. No radiation, no surgery. Docs will never say it is in remission - that doesn't happen with UPS. I give a lot of credit to being mentally strong, and I am a give-me-the-facts type person. So, stay positive and resilient.

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No_one_knows;
*****Just like @gemmalt I am curious about which chemo and immunotherapy you were treated with.*****
I have stage 3b UPS. There is a small 3mm spot in my right lung; a possible met. When it was first seen Dec 2024 it was 4mm. It is now 3mm. (Jul 2025.) I am receiving pembromizulab (Keytruda) once every 3 weeks, but my oncologist said that pembro doesn't usually cause mets to shrink... I had surgery (before pembro) and radiation treatments (while also receiving pembro treatments). I had breast xcr 20 years ago and received chemo, which now limits how much more I can receive. (Same chemo drugs for UPS that I rec'd for breast xcr.)
I hope all is going well for you.

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dresikap | @dresikap | Aug 22 4:49pm
In reply to @speedreader "Hello, I had a tumor on my right calf and it was diagnosed as undifferentiated pleomorphic..." + (show)
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Hello, I had a tumor on my right calf and it was diagnosed as undifferentiated pleomorphic sarcoma last November.. I did 5 weeks of radiation to knock it down in size so they would not take my calf muscle. The tumor was removed on 2/15. The surgical wound was 5.5 inches across and exposed the calf muscle. It took me 6 months to get the wound healed and closed. I did high protein diet, Vitamin C IV treatments to granulate tissue , Hyperbaric Oxygen treatments and a skin graft. The surgery biopsy said over 70 percent kill rate of tumor cells and clear margins. Follow up MRI of surgical wound and CT scan of chest. As I approached my 6 month scan, I found 2 lumps in my groin. The results of the second biopsy show three lumps. There is a third lump deep in the pelvic cage. The Tumor Board is meeting to discuss treatment. I am guessing chemo. Once I get a treatment recommendation I wanted to hear how chemo has worked for other undifferentiated pleomorphic sarcoma patients. Thank you. speedreader

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Hi, how are you now? Did you get chemo treatments and how was it. I hope you got full recovery and wish you well.

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gemmalt | @gemmalt | Sep 19 3:22pm

Hi
Anyone currently on Pazopanib for lung mets (primary UPS), just looking for some positive stories and common side effects (this is second line after progression on Trabectadin ), thanks

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marrish04 | @marrish04 | 4 days ago

I hope this message is well placed.
My grandson, age 18 was just diagnosed and has had surgery. Unfortunately, they were
There seems to be confusion over treatment options.

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