Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

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?

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.