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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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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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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Profile picture for speedreader @speedreader

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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Profile picture for nooneknows @nooneknows

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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Profile picture for 4mysis0617 @4mysis0617

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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Profile picture for nooneknows @nooneknows

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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Which chemo please?

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UPS was found quite by accident on May 26, 2024. I never felt sick or sore; what a shock!!! On July 28, 2024, the sarcoma mass, about the size of an adult fist, was removed along with the femoral nerve that was in the mass. I also found out that it was Stage 3 and I had had it for 3 years. I had in-home care after being in the hospital for 10 days. Radiation occurred for 6 weeks every day beginning the middle of September. Shortly after radiation I began PT as I had to use a brace and a walker with no muscle in my right leg. The mass was located at the top of my right leg. I ended PT the end of March; my PT knew she had done everything that could be done and I did too. So far, I see my radiation doctor every 4 months and have a CT scan of my lungs and an MRI of my surgical area to make sure it has not metastasized. I just celebrated my 80th birthday 1200 miles from home with family and friends. Please feel free to contact me if you need further assistance. I feel great!!! Stay positive!!! It helps you to heal.

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Profile picture for 4mysis0617 @4mysis0617

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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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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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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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to Connect, @me67.
Thank you for starting this conversation about undifferentiated pleomorphic sarcoma. Hopefully by starting this discussion, we will attract other people to join in and share with. While we wait for that to happen, I would like to connect you with other members who have rare sarcomas, albeit of different types. Please meet @udderplace who has liposarcoma, @brinys who has angiosarcoma and @deborahe who has cricoid chondrosarcoma.

Me67, can you tell us a bit more about yourself. When were you diagnosed and what treatment(s) have you had?

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This is definitely a tough diagnosis. I have searched for your responses and haven't seen anything. I certainly hope you are still alive and well. But this is potentially a death sentence (UPS). Hard words to say, hear, and accept.

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