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Colleen Young, Connect Director avatar

Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: Oct 17 10:30am | Replies (1111)

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Profile picture for scrowe200 @scrowe200

I have surgery on Mar 6 for an undifferentiated Pleomorphic
Sarcoma. Staged intermediate.

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Replies to "I have surgery on Mar 6 for an undifferentiated Pleomorphic Sarcoma. Staged intermediate."

Hello @scrowe200 and welcome to Mayo Connect. I am glad that you found this forum as you approach this rare cancer diagnosis and surgery. How are you doing with this? Is this your first cancer diagnosis?

@scrowe200
My husband just completed surgery to remove a 6" UPS in his brachial plexus. 12-hour surgery at MD Anderson with 5 teams of surgeons. Prior to surgery, he had 25 greys of radiation to kill the tumor. The pathology report came back with the tumor as 90% dead. It was well encased but due to location, zero margins. He will have CT every 3 months for next year and then every four months for the 2-5 years.
When he was first diagnosed with the UPS, he was accepted and enrolled in a Phase II Study called Apollo which included: Neoadjuvant Atezolizumab with Dozorubicin, Concurrent Atezolizumab with Pre-operative Radiation Therapy and Adjuvant Atezolizumab in Patients with High Risk Surgically Resectable Extremity and Truncal Soft Tissue Sarcoma. But unfortunately, after just the first treatment, his tumor doubled in size over 3 weeks. He immediately elected out of the trial and pivoted to radiation. Chemo tends not have much success for this type of cancer and we were talked into it by both the Vanderbilt and MD Anderson team. It is the recipe they like to try first. Both wish we had trusted our research and done radiation and then surgery. The delay caused the tumor to grow so much that he now has very little use of his right arm. Nerve damage by the tumor. Anyway, he is now doing Physical therapy and continuing immunotherapy with Pembrolizumab aka Keytruda drug which btw is billed to the insurance company for $35k each shot. He will have 18 total shots. Lots of side effects so I'm monitoring him closely.