Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?
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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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.
My Dad is Stage 4, had UPS with lung mets - he found Trabectadin has held back the lung mets for over 2 years
Which chemo please?
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.
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.
My sister was just diagnosed with stage 4 UPS, has anyone gotten to that stage on here? What were your treatment options?
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.
Welcome, @arlin. What treatment(s) did your husband have? How is he doing now? How are you doing?
My husband was diagnosed with pleomorphic sarcoma Feb 2024
It went ok. By the third treatment I noticed some coughing at night, diminished appetite, nausea, and sleeping more. We live about 5 hours from Rochester so we decided to go home for the weekend. We got to spend time with our kids and grandkids. One week down! Yay! Thanks for asking