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Myxofibrosarcoma: What treatments did you have?
Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)Comment receiving replies
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.
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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.