Myxofibrosarcoma: What treatments did you have?

Thanks again.

@ltj61 My doctors are at Milwaukee's Aurora St Luke's Medical Center. Go cheeseheads.
I was diagnosed with a Myxofibrosarcoma in my right thigh last November. I remember how scared I was of that initial meeting with the entire Sarcoma team. One of the first things I asked was how many of my type of Sarcoma they had treated and nobody was offended. At the end, we - not just they- had a treatment plan. I had radiation and surgery.
Early on, I reached out to Imerman's Angels and have/had a wonderful one on one mentor who had gone thru pretty much the same. Please check them out if you think that would help you https://imermanangels.org/. Best Wishes.

@verena I actually had my appt today with the radiation oncologist, nurse practitioner and medical oncologist. My PET scan thank goodness came back clear so I’ll be starting radiation followed by surgery as well. Both doctors are confident the risk of recurrence is low. I feel so much better having the info and an actual plan. The waiting and fear of unknowns was literally hell for my family and me. Thank you so much for reaching out. Connecting with people going through or who have gone through this is so helpful. Best wishes to you as well!

Hi! Just wanted to reach out and say hi. I just joined this group but we are on similar timelines (I got diagnosed late april and just completed radiation and surgery to remove a myxofibrosarcoma tumor on my thigh (also spent about 2 yrs having it misdiagnosed as a cyst). Happy to connect more if you want to share treatment experiences or just vent. Hope you are letting yourself feel whatever you need to feel and taking things one day at a time!

Hi, thanks so much for reaching out. I finished my 18th radiation treatment today and have 7 to go. Just been a shitty summer and will be until I’m thru recovery I guess. I just met with my radiation oncologist and she likes the way my treatments are “lining up”. My surgery isn’t scheduled yet and I’d like to get that on the calendar. Just want this thing out of my body! As I get close to the next step, I want more info just like before but ik I need to be patient. I know you know and yes, I’d love to hear how you’re doing. Not sure if these posts are public and happy to communicate with just you if there’s a way to. Thanks again for reaching out.

Hi!
I hope radiation is going okay and that your side effects have been manageable!! Let me know if you want a recommendation for a skin cream that worked well for me. So glad you are close to the end. And hope you get some concrete information about surgery too! It is very hard to live in that window of time where you know you have something big coming up but you can't really make any definite plans around it.
From what I could find there is a way to private message but my account doesn't allow it yet because I'm newly joined. You might be able to message me though, not sure. Either way I'll check back in a few days and see if it is enabled for me.
Take care this week < 3

I was diagnosed with stage 2 Myxofibrosarcoma in June 2021. My treatment consisted of 20 sessions of radiation, surgery to remove a 14 inch tumor from my right lower leg. Along with the tumor the surgeon removed most of my fibula bone, a muscle and nerves that were encapsulated in the tumor. Five months after surgery I had three months of chemotherapy. Good news is that I have had clean scans since, however, it continues to be a hard road. During chemo I had a radiation ulcer that required surgery in 2022. Also in 2022 I had four leg infections which I almost lost my leg and a blood clot in that leg. 2023 was a year of convalescing. At that time I wasn’t sure I would be able to walk without aid. However, I was very determined and was up to the challenge to prove to myself I could walk and more. This past spring my husband and I went on a cross country trip where we hiked for several miles and up mountains on several occasions. We explored a cave with a very rocky floor. Climbing over boulders. Riding our bicycles for 20-30 miles. I still experience pain from neuropathy and a rare leg inflammation the full length of my incision, plus a broken screw and loose screw in my ankle (I wonder if the loose screw is in just my ankle : ) , but I will not let this get me down. I am a young 68 and need to keep up with my 71 year old husband who also was diagnosed with cancer in 2022. His was detected early and is now clean, too. I believe the key is to have a great support system and a strong positive outlook with a bit of humor. If you feel sorry for yourself you are doomed. Just remember there is always someone worst off than you. I think of my neighbor’s 8 year old grandson who has been fighting brain cancer for half his life and unfortunately his outcome looks bleak. You wouldn’t know it to watch this young man. He lives life to the fullest with a smile on his face. We all need to learn from him.

Your positive attitude is beautiful
You have been through so much yet you don't give up.
I too have myxofibrosarcoma in my lower calf.
It was a tough recovery but my pain in my leg everyday reminds how lucky I am to still have my leg.
10 years ago we might not have been so lucky.
Thank you for sharing your journey

Thank you. I, too, think of how lucky I am to still have both legs even though it continues to give me so many problems. If you don’t mind, I would be interested to know if you have neuropathy or other issues with your leg and how you deal with it. I also have Lichen Sclerosus, an inflammation, along my incision which causes a burning sensation. Night time seems to be the worst. The nightly symptoms are the same, however, relieving the pain changes. Some nights CBD cream helps and other nights just putting Aquaphar on my leg relieves that pain. Then other nights a wet cloth over my leg helps. The sun and hot summer days also bothers me with a burning sensation I am told that the radiation is the cause of that, however the Lichen Sclerosus doesn’t help either. I keep my leg covered at all times when I am in the sun. I bought those arm sleeves with sun protection and I slip it over my leg. I couldn’t wear compression sock because it caused too much pain until I cut off the foot portion. Now I can wear it for a few hours which helps when I am sitting too much. Any other tricks you can pass along to help with pain I would greatly appreciate. It’s sad to have others in the same boat as me, but it’s nice that someone else can relate to my problems.

I noticed a lump on my calf when I was shaving. Went to the drs they said you must have bumped it and I said no didn't bump it.
It just kept growing. Had MRI nothing showed up. No one was worried at all.
1 1/2 years later went to vascular surgeon they thought it was an avm. So went into surgery when surgeon got in there he took sample sent it to be biopsies. I didn't know any thing until I went back a week later to get stitches out. Sacramento could not diagnose it they sent it to Boston where it was diagnosed myxofibrosarcoma.
My vascular surgeon saved my life.
No surgeon's in SMF
So went UCSF during the peak of Covid
Did all appts via zoom with surgeon, radiologist, oncologist and plastic surgeon. Had 2nd surgery Dec 2020 No one was allowed in hospital except patients. I met with orthopedic specialist few minutes before surgery they weren't sure if the could save my lower leg .
After removal and margins clear they administered brachytherapy into my open incision ( a large amount of radiation) then the plastic surgeon did skin graft and closed up my leg. Then 6 days hospital with full leg boot I had to wear 24 hrs a day for a month.
They wanted me to go to rehab because no walking on leg for month because skin grafts do not take if walking on leg i said no. They said we don't send people home and I said I'm going home. I had to prove I was strong enough to go home. Then a month in bed.
Except week later back to ucsf to get stitches and drain out.
Then 4 weeks later more radiation 6 1/2 weeks.
They used a bolus on my calf over skin graft and most of calf to make it burn more to make sure they get everything.
Turned skin graft to mush. Very painful.
I agree with you with the pain at nights are the worse can't have anything touching my leg. Can't have heel touching anything. They had to remove part of my Achilles tendon. I have the same amount of pain I had after surgery and radiation
Drs say it's as good as it will get. Its been 3 1/2 years since my last radiation treatment. My pain reminds me how lucky I am. I wear juzo support stockings they hurt but need them to control the swelling. Some days need a cane. But I keep going no matter what just like you. Don't take any pain pills they just don't help. Have tried cbd creams aquaphor nothing really helps.
Did your surgery effect your foot?
Mine feels very numb and tight alltime also. also.
Sorry so long.