Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

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 🤞

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

Hi,

Do I need to weigh in on the discussions?

Thx

Mahesh

Hi @carol71050, welcome to Connect.
There is also an active discussion about sarcoma happening here.
- Diagnosed with sarcoma? Let's share https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/

You can read more about @me67 here: https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/?pg=5#comment-64327

Carol, when were you diagnosed? What treatments options are you considering?

Hello, I know its been a while since you posted on here. I have the same diagnosis..had surgery and now in a puzzle what to do next and where to go

Hi @me67,
I encourage you to start a new topic in the Cancer group about getting your first appointment in oncology at Mayo Clinic. I'll introduce you to members who can share their experience with you. In the meantime, you may also be interested in reading this discussion.

- Getting your first appointment http://mayocl.in/2iNdgpc

@me67 I'm so sorry to hear of your diagnosis, but it appears that your primary care doctor as well as your oncologist are great people who are really working on your behalf! How fortunate. Keep us posted on your appointment at Mayo and let us know when it will be and how it goes for you. We are all rooting for you and wishing you a good appointment with a helpful treatment plan. Keep in touch. Teresa