Myxofibrosarcoma: What treatments did you have?

Thank you. Strong is the only way I know how since my diagnosis.

I live in central NY. About 35 miles east of Syracuse NY where my team of doctors are. I still get regular CT, MRI and X-rays. Now it is every 4 months soon to be every six months. After two years it will be once a year. The doctor said that the only option I have, aside from doing nothing right now, is drilling on both sides of my ankle to remove the screws. I am going to hold off as long as I can. I am not ready to be laid up for months again. My heart goes out to you as it can’t be easy being a caregiver of two and having your own struggles. I have said that God only gives you what you can deal with. He certainly has given you so much. If you don’t mind me asking some questions. How big was your tumor? Did they have to remove your fibula bone and a muscle? What state are you in? Do you get scans only of your legs and chest area? I have asked about brain scans and the doctor didn’t feel it was necessary. My dad passed from a brain tumor and it does concern me that it could spread to the brain as any cancer can. So I wonder why they wouldn’t scan there, too? Sorry about all the questions. If they are too personal I understand. I hope you have good support system and help. You sound like a very strong person, but is good to accept help when offered.

I agree with you on not letting our cancer define us.
One can be depressed and down all the tine our choose to move on.
I was just so grateful there was treatment for my cancer since it is such a rare cancer.
I am also very grateful for my doctors.
I try to support all fundraisers for the research of sarcoma.
Since so little money goes to Sarcoma.

I didnt and dont have time to dwell on my cancer I'm a care giver for my husband who has Parkinsons and can't walk anymore and my 93 yr old father who lives with us.
Thank you for sharing more of your journey with me.
You have been through a lot and you just keep going. You have had some painful setbacks but you never give up.
Sometimes I think think the setbacks make us stronger or we just see how strong we are.

What will you have to do next with the problems you are having with the screws in your foot?
Do you have to do routine scans ct and mri?
What state do you live in?

Very inspiring in spite of a difficult and challenging journey. Keep going strong.

When my tumor was removed they had to also remove a muscle and the Fibula bone leaving just stubs connected to the knee and also the ankle. They put two screws in my ankle to keep my stub in place and foot from dropping severely. Unfortunately since March I have one screw loose and one appears to be broken. I have a lot of numbness just above my ankle and basically my whole foot. When it isn’t numb I have nerve pain shooting through my leg where I had a radiation ulcer. I had to have a skin graft done over the ulcer. I don’t have much pain right now from the faulty screws, but I am sure the pain will happen at some point. I also have a bad bunion on this same foot. That ads to the pain level, too. I do take gabapentin, but cut that in half in May and I’m able to live with that. I lost the weight I had gained from the medicine and I am sure that has helped with my movement. I try to keep up with exercising and riding a bicycle. Some nights the pain just wakes me up and then I try my different remedies and see which one will allow me to go back to sleep. The next day I either push through or just decided I need a day of rest. I have a wonderful husband that doesn’t question what looks like laziness. He supports me in every way. I hope you, too, have a good support system. I also looked at other cancer patients when I went for my treatments. Some were so depressed and devastated by their disease and then there were a couple patients that stood out. They would be laughing and joking with the nurses or any one next to them. I knew I wanted to have that attitude because not only was it good for me, but the people that surround me. I am not going to let cancer define my life as being a victim of this disease. Sorry this is long, but it is good to vent sometimes.

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.

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.

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

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.

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