Myxofibrosarcoma: What treatments did you have?
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.
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My tumor was on the right leg. I have found, too, that going in a pool or even a cool shower helps. That is why I try a wet washcloth over or around my lower leg to see if that remedy works for that particular night. Now last night it didn’t work, but the compression sleeve did. Go figure.
Thank you. You have a good weekend also.
Your tumor was much larger than mine. I bet they took a picture of your tumor since it is such a rare cancer and yours was so large. Which leg was your
tumor on?
One thing I thought of that does help with my leg pain is walking in the pool at the gym or down at the lake.
The cold water feels so good.
Have a great weekend.
Wishing you the best of luck. Being healthy to start with is great as cancer does take the wind out of your sail for a bit. It took me a year to be able to walk unassisted, but I was determined. My goal was to hike up a mile high mountain behind our cabin by the end of 2023. I didn’t make it that year, but I was able to hike up the mountain with my husband and friends to watch the eclipse in April of this year. I cried when we hit the summit. I have continued to push myself to do more. I definitely have taken some down time as needed and that is just as important as keeping fit. I hope your recovery is speedy.
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.
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
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.
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.