Myxofibrosarcoma: What treatments did you have?

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.

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 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.

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.

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

No questions off limits😊
I live in Folsom CA
30 miles from Sacramento
My care since 2nd surgery is UCD
My oncologist is head of lab research for Sarcoma so feel very fortunate.
And she is very young.
I was doing cts of lungs and stomach every 3 month and mri every 4 months for first 3 years. Now do cts and mri every 6mo. for next 2 years. This last year started getting contrast with cts every other 6 mo. because new research has shown to be a more thorough scan. Do you get contrast with your cts?
No x-rays.
Soon as I was diagnosed had a pet scan from top of head to toes.. Since then have had 2 more from head to toe.
So sorry to hear about your father. I definitely see and feel your concerns.

My tumor started size of a boulder marble and grew to a x-large plum in a year and half. Mine was high grade. Did not have to remove any bone. Just muscle, tendons and a couple inches of my Achilles tendon was removed. I was lucky mine is just 2 inches directly above ankle bone. I think that saved me.
I was told chemo would not help me but didn't you have chemo?
Will bone grow over your screws to give you more stability?
Are your x-rays for your feet to ck the screws? Hope you don't mind the questions.

I am just one week out of a very rare breast sarcoma cancer surgery and doing well. However, the cancer can be treated but not cured. Fortunately, I’m in good health now but will have to have. Full body CT scans every 6 months. Mayo Clinic is consulting on treatment. Your story and strength gave me lots of hope that I can continue to be strong. I’m a young but active 78 and hope to be back to full physical activity within a month of release. We have to live our lives to fullest to stay strong

My tumor was 14 inches long from the bottom on my knee down beyond my ankle on the right side of my lower leg. It was approximately 3 inches in diameter at its thickest. One of my nurses was able to get a colored photo that the surgeon took of my tumor after it was removed. It looked like a steak with bone in. Crazy. I would be interested in doing a pet scan from head to toe. Maybe I’ll investigate that. I wasn’t supposed to have chemo at the beginning when they were in the planning stages, however, after my radiation treatment and then surgery the team decided to play it safe and do chemo. The surgeon was confident he had gotten it all, but not enough to skip the chemo. I started chemo in February 2022, however, after my third session I had a reaction to the chemo and had to take a break while they came up with a new formula. Then I finished up the end of April. When I was still doing radiation we went to Dana Farber in Boston. Possible the same place your biopsy was sent. I met with a team of doctors there and they had never treated Myxofibrosarcoma either. Their plan was the same as my NY doctors so I decided to stay with NY. It’s been three years since the screws were put in. I don’t know how long it would take for bone to grow. My x-rays are of my lower leg/feet and also a chest x-ray. I am happy to answer any questions.