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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sallymc | @sallymc | Feb 8 6:03pm

Best of luck with your surgery! Since this type sarcoma likes to go to the lungs, I am going back in three months to check on some nodules I seem to have. Prayers for you and I !!!!

REPLY
brenda4usc | @brenda4usc | Feb 4 9:46am
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’m so happy to hear that the surgery was successful and that they got all the cancer! I love your positive attitude and I know that is important for us when battling cancer. I have a large Sarcoma on my left thigh and I have completed 25 rounds of radiation like you and I am scheduled for surgery February 17 to have the mass removed. I’ll be honest I’m scared but I have a great support system with my family and friends and my faith and God thank you for sharing your journey and may you know you have helped one scared lady❤️‍🩹🙏❤️

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1 reply
sallymc | @sallymc | Feb 2 1:35pm

So sorry about your diagnosis. I was diagnosed with Myxofibrosarcoma in back of my thigh after I couldn’t handle the pain. Chiropractor told me I had sciatica. Well the tumor was pushing on my sciatic nerve ! By the time I went to doctor re pain etc I had an mri that diagnosed the tumor as soft tissue sarcoma and biopsy revealed the kind: a high Myxofibrosarcoma 😢. Of course I went home and googled it only to end up thinking I might live months to max of 3 years My tumor was really big 9cm x12cm It was so close to nerve the surgeon had me have 5 weeks of radiation. I promptly totally lost my appetite and everything smelled and tasted different .. and not good ! I just couldn’t eat. Thought it would get better after radiation but it didn’t. I was wasting away literally ! My GP and I decided I had to have a feeding tube so with that I got better enough to have my surgery. Weirdest thing is the night after my operation my appetite , smell and taste all went back to normal !
Anyway , I just had a pet scan to see if the cancer metastasized especially to lungs. My edges were negative but I read it likes to come back I will not have chemo in IV. Would kill me Might do a chemo pill if there is one for this but I’m ready to look for opinions where there has been research or lots of experience . MDAnderson in Texas is one thought. I’m ready to fight and don’t want same ole thing that doesn’t work and just makes you sick. Any experience out there let me know ! Sally c

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 7, 2024
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?

REPLY
crystald | @crystald | Oct 2, 2024
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
ljt61 | @ljt61 | Oct 1, 2024
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?

Jump to this post

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
3 replies
crystald | @crystald | Jul 26, 2024
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.

Jump to this post

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
4me | @4me | Jul 26, 2024
In reply to @crystald "My tumor was 14 inches long from the bottom on my knee down beyond my ankle..." + (show)
@crystald

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.

Jump to this post

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.

REPLY
1 reply
crystald | @crystald | Jul 25, 2024
In reply to @jrs2024 "I am just one week out of a very rare breast sarcoma cancer surgery and doing..." + (show)
@jrs2024

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

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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.

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crystald | @crystald | Jul 25, 2024
In reply to @4me "No questions off limits😊 I live in Folsom CA 30 miles from Sacramento My care since..." + (show)
@4me

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.

Jump to this post

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.

REPLY
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