Undifferentiated Pleomorphic Sarcoma

Hey, I was just diagnosed with the same thing spindle cell type and the treatment recommended because it’s in my right butt muscle is cutting out huge chunks of my butt. They didn’t recommend any radiation or chemo first and if I opt for then I’m gonna be possibly disabled and I’m 62 years old and live alone I’m already disabled from heaven mix fibrosarcoma 12 years ago and getting a giant dose of radiation which crippled me I want to see if there’s alternative treatments please I would love to talk to you and see what’s been recommended to you

Hi Colleen. Chemo is going well so far. No side effects really, just a little nausea a couple of days, and tired some days, other than that I feel pretty good. I felt much much worse going through chemo over the summer. I'll start my second cycle next week. After that I'll have scans to check on progress. Thanks for checking in.

@scs23, just wanted to check in. How are you doing on chemo?

I’m sorry to hear you spent the holidays in pain & in the hospital. You have been in my thoughts & prayers. I finally had my 1st round of chemo. Hearing what you and others have been going through has given me a whole new perspective on this dreaded disease. Hope you are feeling better & continue to do so.

Unfortunately I spent my holidays in the the hospital for pain control. I went in on Christmas day finally came home yesterday. There's 2 tumors in the fluid of my left lung, between the lung and plura. As of a couple weeks ago, one was 9x5cm and the other, 3x3cm, and they're growing. They're pushing on my insides, and it feels like something is trying to burst out of my body. And another tumor started growing a few weeks ago in the soft tissue on my left side. Its about 3x3cm now also. I started a new round of chemo on Jan 2nd, I hope it works fast. I'll have a scan after the 2nd round. Keep me posted, I wish you the best.

Hi Scs23, hope the holidays were kind to you! In response to your question yes the UPS is aggressive. Comparing CT scans from November 2023 to January 5 2024 it has almost doubled in size. Had my 1st round of chemo on the 5th so probably won’t know much until after 2nd or 3rd round.

Primary UPS was in pectoral muscle which was removed in January 2023 with clear margins. Had to remove whole pectoral muscle and replace with another muscle from his back. Now in both lungs.

Has been on Pazopanib now for about 5 weeks. Has a scan in about 3-4 weeks to see if it is working. Takes anti-nausea tablet with 800mg Pazopanib about an hour before breakfast and no side affects except for a bit tummy rumbling. Hope everyone had a lovely Christmas and best wishes for a better and happy New Year. Mickay

Sorry to hear of your diagnosis. If it is not to personal, may I ask the location of your sarcoma? I was diagnosed with UPS in December of this year located in the plura space of left lung(rare begins location). Have you been given a treatment plan. Will start Doxorubicin next week & awaiting Keytruda approval & treatment. Wishing you the best in this unfortunate journey!

Hello, hope you are doing ok. My husband had an UPS in his pectoral muscle which was removed in January 2023. All removed, clear margins but on 31st May 2023 CT Cat scan showed it had mastisised to his lungs. Has had 6 cycles Doxorubicin then 6 weeks off. Petscan showed it slowed it down a bit but bigger sarcomas grew by about 6mls. Has been on Pazopanib for a month with no side affects. Has another scan in a month's time to check if it is working so 🤞🙏