Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

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

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

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

I am being treated for same at MSKCC. Just curious to see if you chose it for your care.
How are you doing today?

I was initially diagnosed with dedifferentiated retroperitoneal liposarcoma in February, 2023 after having a 22 cm, 8.5 lb tumor removed from my abdomen along with my left kidney and left adrenal gland. At first the doctors thought my cancer was kidney cancer because of the location. The pathology of the tumor said different, and the surgeon also knew once he was inside me. He also told my wife after surgery that I probably only had 6 - 9 months to live.

My oncologist recommended 6 rounds of AIM chemotherapy based on studies/data that was over 15 years old saying that there was no more recent studies done on this type of cancer. I went through the first round of AIM which landed me in the hospital for 8 days with full body sepsis and neutropenia which did damage to my remaining kidney. After this experience and a couple dreams while in the hospital which told me I needed to find a different treatment approach I told my oncologist I would not proceed with AIM as I believed it would kill me. He suggested continuing with AIM, but only delaying the treatment by a week, and having it done inpatient. After a bit of discussion he did accept my decision and wished me well.

I have since been undergoing alternative integrated treatment which has worked for me so far, but I am now getting lab results indicating that there is evidence of disease. This test is Guardant 360 which has my cancer classified as pleomorphic sarcoma. I am having further blood work done and will most likely have a PET scan next month.

The alternative integrated treatment I have been receiving started with insulin potentiated therapy (IPT) which is a low dose chemotherapy designed to target only fast growing cancer cells, repurposed medication proven to attack cancer stem cells (slow growing cancer cells which develop later into tumors when environmental conditions allow), and supplements to build my immune system to allow it to naturally fight cancer cells.

This has been a long couple years with lots of fatigue, but I am living each day thanking God for what he has blessed me with.

My husband was diagnosed with undifferentiated pleomorphic sarcoma on January 27th in his right bicep, which is huge. He starts radiation at Mayo Rochester on Monday, February 17th. Radiation 5 days a week for 5 weeks.

Wow! I have recently been diagnosed with pleomorphic myxoid spindle cell neoplasm. Meeting with surgeon on Monday. Just wondering how it worked out.

Don't wait get to a sarcoma center ASAP. I had a 1.9 CM removed in October had 35 radiation treatments and feel good . CT scan in March! It was superficial and did not spread. Waiting for Dr's is very stress full. My radiologist and his team was great. Northwestern Memorial Hospital, ( sorry Mayo)

Find a sarcoma center. Where do you live. If in Ohio there are many sarcoma center. Also get a second opinion.