Myxofibrosarcoma: What treatments did you have?

Posted by jonezzi @jonezzi, Sep 24, 2022

I was diagnosed with Myxofibrosarcoma. It was large and a high-grade tumor. I had my surgery and will start my radiation treatment next week. My oncologist also stated that chemotherapy scheduled. My pathology report came back with no evidence on malignancy. Is chemo still necessary. I know it is my decision just needed to get a second opinion.

Interested in more discussions like this? Go to the Sarcoma Support Group.

bushman299 | @bushman299 | Feb 27 8:12am

In reply to @funkynotes "Has anyone out there had a sarcoma cancer? I am just wondering." + (show)

@funkynotes

bushman299 | @bushman299 | Feb 27 8:24am

I found a bump on my left arm, went to the doctor, who thought that it was just a cyst of some sort. He sent it out to have it tested for cancer and it came back positive for Stage 4 Myxofibrosarcoma. Had surgery on it again, my Dr went as far as he could, close to the bone testing each layer for cancer, until he removed it all. This was in 2016, did the radiation after, 26 rounds just to be safe 5 years of CT scans on my lungs. So far no reoccurrence. Truly blessed!

theremustbemore | @theremustbemore | Feb 28 9:53pm

In reply to @4me "Hi Jonezzi I also was diagnosed with Myxofibrosarcoma high grade tumor in my right lower calf...." + (show)

@4me my husband was diagnosed with Myxofibrosarcoma in 2020. First occurrence resulted with radiation and surgery for treatment. Healing took 4 years, but there wasn’t a recurrence until year 4. The 2nd recurrence was with surgery- no radiation, healed quickly but recurrence only after 4 months. The third recurrence was just recently with surgery and the med team are considering post radiation and looking for options. But I honestly feel there are alternatives and I’m searching and hoping to find something. That’s why I joined this group to see what is working for others.

Thank you for sharing

dfspfs | @dfspfs | Apr 2 8:59pm

In reply to @marshelle "My husband had brachytherapy immediately following his first surgery. It’s a very localized radiation. He had..." + (show)

@marshelle

Can you share what the decision making process was for brachytherapy vs external beam radiation for your husband's case?

marshelle | @marshelle | Apr 2 9:40pm

Hello,
It was actually the oncology radiologists suggestion. He had a massive mass removed from his elbow and the brachytherapy catheters were placed at the same time. He had twice a day radiation for 5 days. That type of therapy is very specific to the area involved. This was in 2021 and as of today he is cancer free.

theremustbemore | @theremustbemore | Apr 9 11:57pm

In reply to @tenacgal "Hi everyone. My 56 yr old husband has been diagnosed with a high grade, 8 cm,..." + (show)

@tenacgal
My husband also has
myxofibrosarcoma. His is located in the lower extremity. I would love to hear more about what you were advised by Vanderbilt and MD Anderson.

My husband had 26 rounds of radiation and then surgery. He unfortunately had a recurrence 4 years later, followed by 2 more surgeries. He continues to seek a way to stop the recurrences, will be meeting with his med team to discuss options. Would love to hear what others are doing!

What form of treatment did your husband choose?

dfspfs | @dfspfs | Apr 12 9:32am

In reply to @marshelle "Hello, It was actually the oncology radiologists suggestion. He had a massive mass removed from his..." + (show)

@marshelle

Thanks for this information.

What did the radiation treatment entail? Did he just spend the whole day in the hospital, then move to the treatment area for treatment? Or was he inpatient the whole time? Or did you go to the hospital twice in a single day, and hang out somewhere between the treatments?

marshelle | @marshelle | Apr 12 10:06am

In reply to @dfspfs "@marshelle Thanks for this information. What did the radiation treatment entail? Did he just spend the..." + (show)

@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.

marshelle | @marshelle | Apr 12 10:07am

In reply to @dfspfs "@marshelle Thanks for this information. What did the radiation treatment entail? Did he just spend the..." + (show)

@dfspfs each treatment lasted about 20 minutes

dfspfs | @dfspfs | Apr 13 11:57am

In reply to @marshelle "@dfspfs each treatment lasted about 20 minutes" + (show)

@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.