Myxofibrosarcoma: What treatments did you have?

@michellebanta
I was first diagnosed in 2021, a lump appeared in my left calf. I went through 25 rounds of radiation and on December 15, 2021 had it surgically removed. I was cancer free until 2025, when suddenly another lump appeared in almost the same area as the first one. We could not do radiation again, not in the same area, so surgery again, we got good clear margins. Cancer free again, but for only a short time, 5 months later and it was back again. Surgery was the only choice we had per my sarcoma team at Mayo, so third tumor was removed. Now four and half months later another tumor in calf so now we are trying to figure out how to stop the tumor recurrence in my left calf, plus deal with a new tumor in my left groin area. I have now started chemotherapy treatment.

@rogercrumpton when were you diagnosed? Also, what was your first treatment?

@michellebanta
I have Myxofibrosarcoma in my left calf and has now moved to my groin area. Mayo started me on chemotherapy with Doxil . I do a treatment every 28 days and schedule is for 6 treatments. It supposed to destroy the cancer cells and reduce tumor size and then look at surgery options. This is my third recurrence and hopefully the chemo will be successful, I have my second treatment next week.

I was diagnosed with Myxofibrosarcoma high grade stage 3 in 2018 in my left forearm. I did radiation before they removed the cancer. My surgeon was the best and we grew very close. Chemo wasn’t an option because of the type of cancer it is. I had a skin graft a month after surgery and wore a wound vac until then. It is now 2026 and I’m still in remission. I do CT’s and MRI’s yearly, which is still pretty scary, I get myself worked up every time. God had different plans for me so the cancer didn’t win. They didn’t have an Oncologist who knew enough about my type of cancer around me so I relied on my surgeon who knew all about sarcomas.

@dfspfs Three days after his diagnosis we met with the team who included oncology surgeon, oncology radiologist and plastic surgeon. They had discussed the case and had come up with this plan of action based on the severity of his situation. The brachy therapy targeted the exact location. He has had beam therapy for the spots that popped up in his lungs months later. That worked well for those spots as well.

@marshelle Did you ask about other options e.g. external beam, or did they present other options besides brachy?

Or did they just suggest brachy and that's what he chose?

@dfspfs I don't mind answering any questions I can. His journey was challenging and absolutely unexpected but all the treatment choices were well worth the outcome.
Initially, he had very little range of motion in that arm. Worked with physical therapy for a long time and used every gadget they had. He still doesn't have full range, but can do basically anything he could do before. His surgeries were very extensive so he does have numbness from nerve damage. He definitely has scars, but that is a small price to pay. Part of his thigh is now his elbow. I'll add a couple pictures (back and side view) of what it looks like now. Compared to what it looked like 5 years ago, it's amazing.

@marshelle Thanks for these details. I'm glad to hear he is cancer free 5 years later.

Did he have any long term side effects like:

- tissue fibrosis (scarring, stiffness, tightness, pain)
- joint stiffness
- bone weakening/fracture
- nerve injuries (pain, changes in coordination/function/sensation)
- necrosis

I really appreciate your replies. They are helpful for feeling less alone.

@dfspfs each treatment lasted about 20 minutes

@dfspfs He went twice a day, several hours apart for 5 days straight. He was not hospitalized at the time and we are fortunate enough to live about 30 minutes from the Cleveland Clinic so we just went back home for a few hours.