Undifferentiated Pleomorphic Sarcoma

Hi,
My mother dignosis with UPS metastatic, she has pain in left hand, then left leg, after 2 month with many test & 4 biopsy result show result as UPS, unidentified primary sarcomatoid carcinoma.
1 chemo Paclitaxel-120 mg + Inj carboplatin 200mg further stopped as there was no CK biomarker positive.
10 radiotherapy Given on Left clavicle bone, L4, L5 Left Hemipelvis with 3DCRT technique on LINAC
to a total dose of 30Gy/10.
Futher 1 month pazopanib 400mg given but lot of side effects it was.
NGS sarcoma Panel-Negative, only gene SDHB-Biomarker positive.
Last hope & try for PEMBROLIZUMAB -200mg suggested.
Request for expert opnion review

@jbbj, welcome to Mayo Clinic Connect, a place to meet other patients and family caregivers living with similar health issues.

It sounds, however, like you are looking for an expert review with Mayo Clinic specialists. To seek a second opinion at Mayo Clinic, you can start here: http://mayocl.in/1mtmR63

It must be so hard to see you mom dealing with the side effects of treatment. When will she start immunotherapy with Pembrolizumab? How are you doing?

I have it! It was localized and mostly removed but I meet with the radiologist and Dr later this week. I don't have much else to say because the Drs don't either! My concern is how often does it come back and how fast can it spread.

I was diagnosed with UPS in April 2023. I had noticed a lump forming on my upper left arm between my tricep and my elbow. My local doctor as well as a radiologist told me it was only a lipoma - nothing to be concerned about. The lump continued growing and bruising my skin - but it never was painful. Finally, some time in March, I grew tired of looking at it, so I booked an appointment with a local surgeon to remove it. It was only after he ordered a biopsy of the tumor that we found out it was Sarcoma.
My sister-in-law is a nurse in Nashville, TN, and she insisted that I go to a sarcoma research facility for treatment. That's how I ended up going to Mayo Clinic in Rochester, MN. I did 3 weeks of radiation in June, and we went back in late July for surgery to get clear margins. I had a skin graft to cover the whole that was cut in my upper arm. After 10 1/2 weeks at home (without driving) wearing a 30 degree splint, I was finally given the green light for physical therapy. Yayyy!! It took about 2 months to get my arm flexibility and decent strength back. I am so thankful to God for the care I received at Mayo Clinic. I am pretty much back to normal flexibility and strength now.

Hello @pilgrim1 and welcome to Mayo Connect. Your post about persistence in finding a problem as well as seeking the best medical attention possible is a great example of advocating for yourself.

I'm sure you are glad that you followed your instincts to get the tumor removed and to have a biopsy. You make a great case for seeking out the best medical follow up possible. I'm glad to hear that Mayo Clinic was an important part of your recovery.

Will you be having follow-ups in the future?

Thanks so much @hopeful33250 ! I am having scans every 3-4 months right now (MRI and CT). The MRIs are the most dreaded scans for me - they last about 90 minutes. After 2 years, I can move to having scans twice a year. After 5 years, I can have them annually until year 10.

@pilgrim1, you are not alone in finding MRIs challenging. You might appreciate the tips shared in this discussion:
- Do you have a coping mechanism to get through an MRI?
https://connect.mayoclinic.org/discussion/do-you-have-a-coping-mechanism-to-get-through-an-mri/
What tips might you have for others about physical therapy after treatment? What helped you succeed?

@wayners, how did your appointment with the radiologist and your doctor go? What is the next step for you?

I was told that there is Maybe, 1 millimeter near my muscle and that I will need 7 weeks of radiation. the radiologist is a

great guy as well as his nurses! Surgeon said looks good and he will see me in 3 months and do a CT scan before I see him. Both were pretty positive and the surgeon said that need to make sure it doesn’t go to my lungs but radiologist feels that it’s a low chance that it will return. Not sure what the chances of that are but both told me just to move on and live my life like nothing happened! 🤞

I had a pleomorphic retroperitineal tumor 16 years ago. They treated me first with chemo to try and shrink the tumor before they removed it. I have been cancer free for 16 years. It just returned. I would be glad to share any information I might have that would be helpful for you