Undifferentiated Pleomorphic Sarcoma

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.

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.

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.

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.

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

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.

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

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?

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,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.