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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 23 10:42am
In reply to @4me "Hi Jonezzi I also was diagnosed with Myxofibrosarcoma high grade tumor in my right lower calf...." + (show)
@4me

Hi Jonezzi
I also was diagnosed with Myxofibrosarcoma high grade tumor in my right lower calf.
I have had 2 surgeries.
During the 2nd surgery I also had radiation on my leg before the plastic surgeon did my skin graft.
Then I had an additional 6 weeks of radiation.
Which played havoc on my skin graft.
But happy to say that is done and my skin graft has healed. I was told chemo did not work on Myxofibrosarcoma by UCSF Stanford and UCD.
I have had 4 opinions.
Where was your tumor located.
It is very difficult to find someone with our cancer.
Looking forward to hearing from you.
4Me

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I had radiation first then surgery. had a large tumor in thigh and was high grade checking on lungs now as that is where this type sarcoma likes to go. Have some nodules , checking in 3 mo's to see if they are growing.
The dr's told me no chemo
I am getting second opinion on what should be done going forward.

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jkrause3 | @jkrause3 | Mar 31 12:15pm

I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and sent me to an oncologist at Banner - After Cat Scan and MRI before any biopsy Banner said Chemo and Radiation and then surgery -
I then reached out to Mayo and things took at positive turn - I met with Dr Goulding Surgeon and Dr Ashman Radiologist - Dr. Goulding encouraged me to do the biopsy which showed I had a low to moderate cancer that was totally encapsulated but the size of a soft ball in my right calf - They consulted with the oncologist who agreed that Chemo was not needed or effective for this type of cancer -
I am on my final week for 25 radiation treatments - and I am getting Proton Radiation - so far no damage to my skin although at end of week 4 felt like I had a mild sunburn inside the leg - Advil eased the discomfort and I have been using an all natural Radiation Burn cream from day one -
I was also enrolled in a Physical Therapy trial to see if doing PT prior to surgery will help in the healing and mobility after surgery. It entails walking at least 30 minutes a day plus a full range of exercises to help strengthen my entire body (I am 70 but in good shape no other illnesses and I don't take any other medications) I am working hard on balancing on 1 leg and the ability to rise from a chair or bed onto one leg - I am also practicing with a walker
I will also have to have a flap as I will lose a lot of muscle - I should expect 7 to 10 days in the hospital and the first 5 I will not be allowed out of bed -
The team at Mayo has been incredible - explaining every step of the way - I am scheduled for Surgery on May 5th - and I know I will have a job ahead of me to gain full use of my leg but feel confident with a lot of patience and hard work I can get there.

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2 replies
jkrause3 | @jkrause3 | Mar 31 12:16pm
In reply to @jkrause3 "I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and..." + (show)
@jkrause3

I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and sent me to an oncologist at Banner - After Cat Scan and MRI before any biopsy Banner said Chemo and Radiation and then surgery -
I then reached out to Mayo and things took at positive turn - I met with Dr Goulding Surgeon and Dr Ashman Radiologist - Dr. Goulding encouraged me to do the biopsy which showed I had a low to moderate cancer that was totally encapsulated but the size of a soft ball in my right calf - They consulted with the oncologist who agreed that Chemo was not needed or effective for this type of cancer -
I am on my final week for 25 radiation treatments - and I am getting Proton Radiation - so far no damage to my skin although at end of week 4 felt like I had a mild sunburn inside the leg - Advil eased the discomfort and I have been using an all natural Radiation Burn cream from day one -
I was also enrolled in a Physical Therapy trial to see if doing PT prior to surgery will help in the healing and mobility after surgery. It entails walking at least 30 minutes a day plus a full range of exercises to help strengthen my entire body (I am 70 but in good shape no other illnesses and I don't take any other medications) I am working hard on balancing on 1 leg and the ability to rise from a chair or bed onto one leg - I am also practicing with a walker
I will also have to have a flap as I will lose a lot of muscle - I should expect 7 to 10 days in the hospital and the first 5 I will not be allowed out of bed -
The team at Mayo has been incredible - explaining every step of the way - I am scheduled for Surgery on May 5th - and I know I will have a job ahead of me to gain full use of my leg but feel confident with a lot of patience and hard work I can get there.

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Also I am told I will be fitted with a brace to help with my gait after surgery

REPLY
4me | @4me | Mar 31 2:08pm
In reply to @jkrause3 "I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and..." + (show)
@jkrause3

I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and sent me to an oncologist at Banner - After Cat Scan and MRI before any biopsy Banner said Chemo and Radiation and then surgery -
I then reached out to Mayo and things took at positive turn - I met with Dr Goulding Surgeon and Dr Ashman Radiologist - Dr. Goulding encouraged me to do the biopsy which showed I had a low to moderate cancer that was totally encapsulated but the size of a soft ball in my right calf - They consulted with the oncologist who agreed that Chemo was not needed or effective for this type of cancer -
I am on my final week for 25 radiation treatments - and I am getting Proton Radiation - so far no damage to my skin although at end of week 4 felt like I had a mild sunburn inside the leg - Advil eased the discomfort and I have been using an all natural Radiation Burn cream from day one -
I was also enrolled in a Physical Therapy trial to see if doing PT prior to surgery will help in the healing and mobility after surgery. It entails walking at least 30 minutes a day plus a full range of exercises to help strengthen my entire body (I am 70 but in good shape no other illnesses and I don't take any other medications) I am working hard on balancing on 1 leg and the ability to rise from a chair or bed onto one leg - I am also practicing with a walker
I will also have to have a flap as I will lose a lot of muscle - I should expect 7 to 10 days in the hospital and the first 5 I will not be allowed out of bed -
The team at Mayo has been incredible - explaining every step of the way - I am scheduled for Surgery on May 5th - and I know I will have a job ahead of me to gain full use of my leg but feel confident with a lot of patience and hard work I can get there.

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First of all I am so happy you feel confident in your medical team which is so important.
I also have myxofibrosarcoma in my right lower calf.
Mine took 1 1/2 years to diagnose. Was finally diagnosed by a vascular surgeon thinking I had AVM ( arterial vein malformation).
Took biopsy Sacramento could not diagnose the biopsy it was the sent
to Boston. Finally diagnosed as Myxofibrosarcoma September 2020.
Had to go to UCSF for 2nd surgery December 2020. I had brachytherapy during surgery (which is radiation put directly into open wound)
I was lucky no flap was able to do skin graft. My first question when I woke up do I still have my calf I did not know if they could save my leg.
So very fortunate for that also.
5 nites hospital no wt bearing wanted me to go to rehab for a month I said no way I work out everyday I'm going home.
Had to be bed bound for one month so skin graft could heal. Too many muscles in calf.
Then 2 months after surgery 6 1/2 weeks of more radiation.

My thoughts and prayers are with you during this difficult journey.
If you need to talk or have questions pls feel free to reach out.🙏🙏🙏

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jkrause3 | @jkrause3 | Mar 31 4:25pm

crazy stuff - I think the hardest part is that I am in great health otherwise - I eat only organic - use only purely natural products for self and cleaning etc. So really pretty angry that I end up with this.

I can't stress that quality of care from Mayo everyone I have encountered is top notch - Also not knowing how much muscle I will lose is another thing that keeps me up at night - but all of my cancer board is telling me I will make a full recovery with time and hard work - so I keep on keeping on

thanks for reaching out and glad you are back on the mend

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nmd78 | @nmd78 | Apr 6 9:22pm
In reply to @sallymc "So sorry about your diagnosis. I was diagnosed with Myxofibrosarcoma in back of my thigh after..." + (show)
@sallymc

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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My adult child is entering 3rd week of chemo for thigh tumor. Will let you know how it goes. Mostly nausea and sometimes throw up afterwards, then better.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | 7 hours ago
In reply to @nmd78 "My adult child is entering 3rd week of chemo for thigh tumor. Will let you know..." + (show)
@nmd78

My adult child is entering 3rd week of chemo for thigh tumor. Will let you know how it goes. Mostly nausea and sometimes throw up afterwards, then better.

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@nmd78, has your adult child's oncology team suggested any medication before or during chemo to help with the nausea? How often do they have chemo?

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