Undifferentiated Pleomorphic Sarcoma

Hi ddbumb wondering how you are going & what treatment you are having. My husband has UPS, has had doxorubicin which slowed it down a bit. Has been on Pazopanib for 3mths (didn't work, some doubled in size) today gemcitabine & docetaxel. Oncologist says no to Trabecadin as it is not proven! Would like to hear from others who have taken Trabecadin. Mickay

Hi Mickay
Dad has UPS (unknown primary but bilateral lung mets), been on Trabectadin as first line for 12 months hardly any side effects, has pump through PICC line for 24hrs every 3 weeks - mets being held back/shrinkage so treatment continues. This is in Velindre Cardiff, South Wales, UK

Thankyou very much gemmalt for responding. I will again put this to my husband's Oncologist. Please keep me updated if possible. Good luck with all treatment.
Mickay

@scrowe200, I'm thinking of you as you recovery from surgery for undifferentiated pleomorphic
sarcoma. I hope you are doing well and look forward to hearing from you when you're ready to post an update.

The surgery went well, so far no problems. It's been 5 days. No pain, just very sore when I move my arm .
I'm very active and the only concern is remembering that I am dragging a lunch box like catch all with tube from my wound. Tomorrow the wound VAC is changed and a new one in place. I was cautioned that if I hear an alarm, the air barrier on the wound has a breach and I will need to reattach a new VAC! Wow!! I can't imagine doing this! Has this happened to anyone else and how did they manage this in a short period of time??

Hi!
My dad was diagnosed with undifferentiated pleomorphic sarcoma in December 2007. He had pain in his R knee for about a year and the local doc just blew it off. His leg started to swell and it became 3 times the normal size. No doc would do MRI as he may have had metal in his eye from work. He finally had a CT scan that showed a massive tumor. Too big for our local docs so referral to Mayo. My parents were told by local doc he was 99% sure it wasn’t cancer as it didn’t present like cancer tumor. Plan for a week or so at Mayo for quick surgical removal and then home. He spent 4-1/2 months there in Rochester. Tumor was cancer (at that time this type was very rare) could find any info on Google about it. They did radiation to toughen up the edges for easier removal. He was given massive dose of chemo (2-3 times the normal dose). After that he threw blood clots thru his heart & lungs and “died” twice, once in the ambulance and once in the ER. Once he recovered from that it was surgery time. The rumor surround his thigh muscle and placed so much pressure on his bone it was deteriorating. They had to place a metal rod in this thigh bone to stabilize the leg, and had to remove the whole muscle. The tumor was 17 in wide and weighed 15 pounds. During removal the tumor broke open and spilled out inside his leg. At 6 month check up it had metastasized to his lungs. More chemo, some tumor got smaller while others got bigger, next check up, spread to his lymph nodes, and we can assume to his brain as there were cognitive issues towards the end. My daddy fought a very hard and long 2 years and lost his battle December 2, 2009. If only his local doctor listened better and didn’t blow him off, maybe the prognosis would have been better. Prayers to all of you who are fighting this horrible disease!! You are in my prayers. God bless!

@khanson22, I'm so sorry that your dad and your family had to experience such a rough journey. I can hardly imagine what this must've been like. Undifferentiated pleomorphic sarcoma (UPS) remains a rare type of cancer. Luckily, awareness of the diagnosis and treatments continue to improve.

I was diagnosed with UPS 1.5 years ago. Had radiation treatment then surgery for removal. The tumor was in my right gluteal. It was completely encapsulated and bargains were clear. CT and MRI for the first year every 3 months, all clear. Now testing every 6 months.
Scary and always on my mind but living everyday to it's fullest.

Well said, @pegstermom2. "Scary and always on my mind but living everyday to it's fullest."

What advice would you offer to someone newly diagnosed with nndifferentiated pleomorphic sarcoma (UPS)? Or, in other words, what did you wish you had known?

I was first diagnosed with undifferentiated liposarcoma in my upper right arm almost 1 year ago. Then, once i started going to the Sarcoma center for treatment, my diagnosis was changed to UPS. I started the routine of CT scans every 3 months and MRI's every 6 months in January 2024. In June we found another lipoma tumor in my elbow of the same arm, but a second dedicated MRI proved that it is benign. It scares me because it wasn't there a year ago, when I found the first tumor. I am trying to not live my life in fear, but I am terrified! Is there anyone here who has made past 5 years with no recurrance?