Myxofibrosarcoma: What treatments did you have?

@kl0409 I was seen within 1 week and from there Mayo setup with the Surgeon, Oncologist, Radiologist , plastic Surgeon and also Physical Therapy
My tumor was quite large it weighted close to 5 lbs. - I did 25 Pronto Radiation Treatments - was enrolled in a clinical trial for pre surgery Physical Therapy concentrate on overall body strength - balance, and training me to use one leg for a period of time this was extremely helpful as I felt I could participate in my own recovery - after the radiation I had to wait 3 weeks for surgery - very important to keep the area well hydrated - I used a radiation therapy lotion daily which really helped - I had to most skin damage after the radiation was completed - but it amounted to mostly a sunburn - Because of the size of the tumor it was anticipated that I would need to have a skin flap taken from my thigh to cover the surgical area - I was really lucky there the size of the tumor had acted like a skin ex pander and so the Flap was not needed. Surgery was 9 hours with I night in Intensive care - I spent 4 nights in the hospital but daily I got up non weight bearing as worked with the PT team with a walker - I used a wheelchair and walker for 6 weeks and then received a Boot cast for walking and began PT - I progressed out of the Boot cast in 2 weeks and was able to walk unassisted - Biggest issue was incision healing where the radiation was concentrated - I was given Medical Bee Honey for the area and that worked really well -
Key is to do your exercises and to move as much as possible It made all the difference in my recovery - I still has a lot of numbness in the leg and my foot but I attend workouts 3 times a week and walk daily
Hope this helps

@jkrause3 thank you for your response. I am glad your recovery is going well. If my mother's doctor team don't act with more urgency I am going to see about getting her in the Mayo Clinic. I am concerned about the size of the tumor and I know they have to run the tests and do the t MRIs but it seems they are scheduling them too far apart. First they said they wanted surgery done by this week and now they don't know. I pray she can get the treatment she needs either here locally or at the Mayo where the specialize in sarcomas. I pray for your continued healing and a full cancer-free recovery.

Hi everyone. My 56 yr old husband has been diagnosed with a high grade, 8 cm, fast growing myxofibrosarcoma located at the bottom of his neck, on upper shoulder abutting the brachial plexus. We just completed visits with Vanderbilt team and are meeting with MD Anderson team 1-3 Dec. After much research, chemo does not seem to work on this type of dense tumor. Husband is strongly leaning towards starting radiation then surgery. Does anyone else have/had this type of tumor and location? I would love to hear from you. Thanks