Undifferentiated Pleomorphic Sarcoma

@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.

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!

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??

@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.

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

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

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

Hello,Two days ago my husband had a large sarcoma removed from his thy. The pathology report on my charts states:RESIDUAL PLEOMORPHIC SARCOMA WITH MYXOID FEATURES, 15 CMAnyone have something similar? I researched and find conflicting information on how aggressive/bad this type of cancer is. They did removed the tumor completely. It has not spread as of a few weeks ago.Thanks for any info.

Your response meant so much to me. Thank you so much you really gave me information I needed and let me say I am so sorry about what you have had to go through. It was so kind of you to tell me details about radiation and surgery and chemo and the exact names. I am going to Emory in Atlanta Georgia where they have a Sarcoma center but I also sent records to MSK and. The mayo clinic I don’t know if I’m just being overreacting and paranoid and she just trust the dogs I have because they are a very good Sarcoma center. Sometimes I complicate things by reading about other peoples and then telling my daughter thinking my doctor doesn’t know what he’s doing. You are precious to give me the information and I thank you very much and you were in my prayers.

Hello @mdurham Im sorry to hear about your diagnosis. I was diagnosed with synovial spindle cell sarcoma in my left lung in January last year. The tumor was already 10cm when we found it. I had surgery in February to remove it, and a second surgery in March to remove it again, as it had grown back to 9cm in six weeks. I started chemo and radiation within days of my second surgery, I finished those treatments in August. The chemo drugs I had were ifosfamide and doxorubicin. Scans from October looked good but scans from December showed 2 tumors in the plura of my lung and invading my chest wall, and now another tumor is growing in the soft tissue on my left side. I just started another regimen of chemo this month. This time the chemo drugs are gemzar and docetaxel. I haven't had any alternative treatments. I got my first recommendations from a sarcoma specialist at Northshore and the new chemo regimen was recommended by Mayo. Have you seen a sarcoma specialist? Or gotten a second opinion?