Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

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.

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

I am so incredibly lucky with my UPS experience. I don't know if my story will help anyone, but I hope so.

In 2009 I noticed a lump that was growing on my waist that was being irritated by my belt. I happened to have an appointment with my PA so I mentioned it. He, like me, thought it was most likely something benign, but he sent me to get a sonagram. I remember him saying "I am sure it is nothing to worry about like cancer."

The sonagram came back with an MRI recommendation, which came back with a concern of possible sarcoma. When I next met with my PA he and I both recalled his comment, and I think he felt a little chagrined. Next stop was to a surgeon.

The surgeon clearly wanted no part of my sarcoma. He said a surgeon like him might see 1 case in a career, and he didn't want it at all. Fortunately, I had friends with experience at Mayo and they encouraged me to go. For the next 6 months I lived at Rochester getting the best possible treatment in the world I believe.

I got the whole shebang, radiation, chemo, and surgery. Followed by regular CTs for the next several years until both me and the Docs felt the CTs were doing more harm than good as nothing was seen. I have been cancer free for 16 years now, and grateful for all of them.

Be kind, and love each other, that is all we can do while on Earth.

@bigbear406

I am so happy to hear about the 16 years cancer free!

We are just one month into this magical mystery tour and have more questions than answers.

Your story was informative and inspirational. Thank you...

It's the connection between you, and other fellow travelers, that has softened the blow and made the path easier to navigate.

Keep on keeping on my friend.

@marrish04 I wish you all the best in your own journey. One thing I learned is each case and every cancer is different. The big "C" is not a single thing in disease or experience. I will follow your experience with as much as you wish to share.

Best.

@bigbear406

I would welcome a follow along on this crazy journey. Kind of like walking with a good friend who gets it.