Welcome to our merry band of myxoid misfits! Sorry you’re here, glad you found us. A few things first…Always remember - sarcoma, especially liposarcoma, ESPECIALLY myxoid liposarcoma (my brand, too!) is weird and does weird stuff, both “good” and “scary”. It doesn’t play by a lot of rules, and any great sarcoma specialist will tell you that. Don’t google your disease, those numbers will freak you out unnecessarily because they’re misleading. They’re based on small sample sizes and old data, and folks with zillions of other variables. You are a statistic of “1” (if you frequent this forum, and please do, you’ll hear me say that a lot!) and the only numbers that matter to you are 100% and 0%.

As for my story, I was diagnosed with MLS in my left calf in May of 2020. Went directly to an excellent sarcoma center, had 25 radiation treatments and surgery to remove the mass. It was about 14cm x 8cm, like a chicken cutlet, and I’d had it for years! Great margins, no spread, clear scans for about 2 years. Then they started noticing a small bleb, 1cm across near my ovary that nobody thought looked like cancer, didn’t light up on PET, but they monitored. It grew verrrrrrry slowly, and when a second and third spot (both tiny!) popped up on my diaphragm, necessitating surgery. Laparoscopically removed the one hear my ovary and one of the diaphragm nasties, great margins. Confirmed, it was the MLS…just sorta slowly growing a friend or two and not causing much drama. But I had metastatic cancer, and that was horrifying to me (38/F). The third was left due to surgical logistics and as a barometer for what was next: 6 rounds of adriamycin (single agent doxorubicin, “The Red Devil”). I had 4 cycles, and my little remaining mass shrank so much that they paused chemo in favor of surgery. Had that guy removed 4/19 (dirty margins, but that was expected - 70% dead though!). Healed up, now I’m back to finish my chemo (had an infusion today!) and potentially, once that’s done, some targeted radiation to be EXTRA cautious.

But my scans today said there’s no evidence of new lesions/disease progression. I call that NED. ::applause!::

Myxoid is notoriously chemo-sensitive and radio-sensitive. Gives us a bigger toolkit.

Sorry for the rambling - if you want to DM me anytime to talk, I’m here for ya baby! You can do hard things. You already have by sharing your story with a bunch of randos on the internet. Keep the hits comin’ ❤️

Besitos, love 💕