Undifferentiated Pleomorphic Sarcoma

Hi:

Have you considered having a proton treatment to rid of cancer cells in the lung?
I had a discussion with Fred & Hutch in Seattle to do proton treatment instead of Chemo if we find lung metastases. You may want to speak with them.

How is Trabectadin going so far? Did it shrink the size of the tumor? If so, how much?

@speedreader, if Mayo Clinic is an option for you, here's how to get started on getting a second opinion http://mayocl.in/1mtmR63

Have you had a consult with your oncologist yet with the results from the Tumor Board discussion? What's the treatment plan for you?

Mayo Clinic may be a good place to receive a second opinion. I am getting my second opinion from Fred & Hutch in Seattle. I think we should get at least a second opinion and a third opinion is preferred.
It comes down to who has more data.

I am glad you are getting a second opinion. I had my tumor removed in 2/2023 after 5 weeks of radiation. I was told I did not need chemo because my chest scan was clear. In August I found lumps in my groin. It went to my lymph nodes. The oncologist says UPS is not supposed to go to lymph nodes. Now I am going through biopsy and tests to determine course of treatment. This time they say it will include chemo, radiation and surgery. I am definitely going for a second opinion this time to a sarcoma cancer center.

Mine was at the upper left thigh. It grew to 8 centimeters but it did not spread to lung according to the CT.

Can I ask where the primary was as Dad has UPS of unknown primary but with lung metastases..I just find it odd as they can’t identify the primary (he’s had abdominal CT).

I was diagnosed with UPS (Undifferentiated Pleomorphic Sarcoma) in May 2023. I had surgery to remove a tumor in July 2023. Currently, I am receiving a radiation procedure ending in October.

I do not have a treatment schedule after radiation though Chemo was recommended by the primary oncology doctor.
I am getting a second opinion from another oncologist to decide what my plan will be.

Hi
No he had slight nausea when he started it but the dexamethasone you take after it seems to get rid of it. Latest CT scan showed decrease in size (he has multiple bilateral) and disappearance of some so we just keep going 🤞- good luck with your treatment plan

Hello Genmalt, Thank you for sharing. Prayers for your Dad. Is he experiencing any negative side effects from the Trabectadin?
I am waiting for my tumor board to recommend a treatment plan for me.

Hi
My dad has undifferentiated pleomorphic sarcoma of unknown primary - they found lung metastases and he is having 3-weekly Trabectadin which is doing the job so far so good 🤞