1. < Sarcoma

Myxofibrosarcoma: What treatments did you have?

Posted by jonezzi @jonezzi, Sep 24, 2022

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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crystald | @crystald | Jul 26 7:07pm
In reply to @4me "Your tumor was much larger than mine. I bet they took a picture of your tumor..." + (show)
@4me

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.

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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.

REPLY
ljt61 | @ljt61 | Oct 1 9:38am
In reply to @colleenyoung "Welcome, @ljt61. I can imagine that you are frightened. But you are not alone. I'm tagging..." + (show)
@colleenyoung

Welcome, @ljt61. I can imagine that you are frightened. But you are not alone. I'm tagging fellow members like @4me @liv38556 @jonezzi @marshelle @chuck138 @michellebanta @lgshoaf @enver @thompta who have experience with myxofibrosarcoma.

This is all so new for you @ljt61 and like you said you're still in a state of shock and on an emotional rollercoaster. Waiting is the hardest part. I bet you have a lot of thoughts and questions whirling about in your head as you wait for your appointments with the radiation and medical oncology.

Have you started making a list of questions? Not sure even what to ask?

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Hi all,
I wanted to update you since my post on 5/27. I had 25 treatments (5 wx, 5 days a week) and then had 6 wx for the radiation to do its thing. Not fun. On 9/10, my tumor was removed and sent to the lab. 2 days after I received the most incredible news that my surgeon got it all/all negative margins for sarcoma. On 9/16 my plastic surgeon did the flap surgery (differs from a skin graft) which involved taking skin from my thigh and attaching its blood vessels to the blood vessels left in the large hole in my foot. I spent 8 nights in the hospital as they had to check the flap every hour round the clock for 48 hours to make sure it stayed alive. It’s a fascinating procedure that has literally blown my family and friends away. Now I face about a 2 month recovery. I am wheelchair bound and my leg must be elevated and straight out at all times. I’m anxious for my first follow up on Thursday. I’m so fortunate and grateful to my amazing team of doctors and though I have a long road ahead I’m in a very different place emotionally than I was in May when I was first diagnosed. I hope this may help someone that was as terrified as I was when first getting the news. Best to everyone.

REPLY
2 replies
crystald | @crystald | Oct 2 12:30pm
In reply to @ljt61 "Hi all, I wanted to update you since my post on 5/27. I had 25 treatments..." + (show)
@ljt61

Hi all,
I wanted to update you since my post on 5/27. I had 25 treatments (5 wx, 5 days a week) and then had 6 wx for the radiation to do its thing. Not fun. On 9/10, my tumor was removed and sent to the lab. 2 days after I received the most incredible news that my surgeon got it all/all negative margins for sarcoma. On 9/16 my plastic surgeon did the flap surgery (differs from a skin graft) which involved taking skin from my thigh and attaching its blood vessels to the blood vessels left in the large hole in my foot. I spent 8 nights in the hospital as they had to check the flap every hour round the clock for 48 hours to make sure it stayed alive. It’s a fascinating procedure that has literally blown my family and friends away. Now I face about a 2 month recovery. I am wheelchair bound and my leg must be elevated and straight out at all times. I’m anxious for my first follow up on Thursday. I’m so fortunate and grateful to my amazing team of doctors and though I have a long road ahead I’m in a very different place emotionally than I was in May when I was first diagnosed. I hope this may help someone that was as terrified as I was when first getting the news. Best to everyone.

Jump to this post

I find it very interesting that you had a flap done, too. However, my surgeon took the skin and blood vessel from my left arm and then a patch from my right thigh for a graft over my arm. Unfortunately the surgeon was very concerned about my flap failing that he stuffed the flap with way too much fatty tissue. I guess he felt the fatter it was the more successful the flap. My flap sticks out at least an 1 1/2 inches from my leg and is about six inches long. It is very hideous looking and I hate it, but the flap has not failed, which I was told that 95% of the flaps fail. It’s been two years since my flap surgery and three years since my cancer surgery. I did have chemo therapy. I think about eight rounds of chemo. They wanted to be sure that they got it. All is well now. Even my neuropathy isn’t as bad. Although the hot days still bothers my leg. A wet cloth and elevation seems to help that. I did accomplish something I never thought I would do and that was ride my bicycle for 52 miles in a charity ride. I have far exceeded any goal I have set for myself this year and it only gets better. I hope you have as much success with your recovery and future. Best of luck.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 7 12:35pm
In reply to @ljt61 "Hi all, I wanted to update you since my post on 5/27. I had 25 treatments..." + (show)
@ljt61

Hi all,
I wanted to update you since my post on 5/27. I had 25 treatments (5 wx, 5 days a week) and then had 6 wx for the radiation to do its thing. Not fun. On 9/10, my tumor was removed and sent to the lab. 2 days after I received the most incredible news that my surgeon got it all/all negative margins for sarcoma. On 9/16 my plastic surgeon did the flap surgery (differs from a skin graft) which involved taking skin from my thigh and attaching its blood vessels to the blood vessels left in the large hole in my foot. I spent 8 nights in the hospital as they had to check the flap every hour round the clock for 48 hours to make sure it stayed alive. It’s a fascinating procedure that has literally blown my family and friends away. Now I face about a 2 month recovery. I am wheelchair bound and my leg must be elevated and straight out at all times. I’m anxious for my first follow up on Thursday. I’m so fortunate and grateful to my amazing team of doctors and though I have a long road ahead I’m in a very different place emotionally than I was in May when I was first diagnosed. I hope this may help someone that was as terrified as I was when first getting the news. Best to everyone.

Jump to this post

@ljt61, such good news. I hope you'll continue to post on your road to recovery. How did your first follow-up go?

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