Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

@chocho, just checking in. How did your appointment with the surgeon go? What is the plan? How are you doing?

@janiemae, how did the first week of radiation go?

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

My husband was diagnosed with pleomorphic sarcoma Feb 2024

Welcome, @arlin. What treatment(s) did your husband have? How is he doing now? How are you doing?

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.

My sister was just diagnosed with stage 4 UPS, has anyone gotten to that stage on here? What were your treatment options?

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.

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.

Which chemo please?