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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michellebanta | @michellebanta | Aug 1, 2023
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 was diagnosed August of 2018. I had surgery and radiation and a skin graft on my forearm. I was also told that Chemo would not touch it. I had stage 3 high grade.

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michellebanta | @michellebanta | Aug 1, 2023

I’m curious. It’s been almost 5 years since my diagnosis and surgery. All of a sudden I’m starting to get so tired early that I actually have to go to bed. Maybe I’m just worried but has anyone else experienced this? I go for my CT AND MRI in a few weeks. Worried it’s come back.

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1 reply
gemmalt | @gemmalt | Aug 2, 2023
In reply to @marshelle "Yes. My husband’s mass was in the elbow and axillary lymph node then nodules popped up..." + (show)
@marshelle

Yes. My husband’s mass was in the elbow and axillary lymph node then nodules popped up in lungs.

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Dad had UPS sarcoma on his back and now has bilateral lung sarcomas - they won’t operate, he’s been on chemo for 6 treatments (Trabectadin), awaiting CT scan results to see if it’s holding it back 🤞

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 11, 2023
In reply to @michellebanta "I’m curious. It’s been almost 5 years since my diagnosis and surgery. All of a sudden..." + (show)
@michellebanta

I’m curious. It’s been almost 5 years since my diagnosis and surgery. All of a sudden I’m starting to get so tired early that I actually have to go to bed. Maybe I’m just worried but has anyone else experienced this? I go for my CT AND MRI in a few weeks. Worried it’s come back.

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Hi @michellebanta, have you received the results of your imaging studies yet and talked with your doctor? How are you doing?

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michellebanta | @michellebanta | Aug 16, 2023

I go on the 22nd for my CT and MRI. I’m still feeling cold all the time and tired. I don’t see a new lump forming on my forearm.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 29, 2023
In reply to @michellebanta "I go on the 22nd for my CT and MRI. I’m still feeling cold all the..." + (show)
@michellebanta

I go on the 22nd for my CT and MRI. I’m still feeling cold all the time and tired. I don’t see a new lump forming on my forearm.

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Hi Michelle, How did it go on the 22nd? What did you learn?

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michellebanta | @michellebanta | Aug 30, 2023
In reply to @colleenyoung "Hi Michelle, How did it go on the 22nd? What did you learn?" + (show)
@colleenyoung

Hi Michelle, How did it go on the 22nd? What did you learn?

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My CT and MRI came back clean I am now considered in remission.I’m so happy and so is my family.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 30, 2023
In reply to @michellebanta "My CT and MRI came back clean I am now considered in remission.I’m so happy and..." + (show)
@michellebanta

My CT and MRI came back clean I am now considered in remission.I’m so happy and so is my family.

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That's fantastic. Thank for the update!

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chuck138 | @chuck138 | Aug 30, 2023
In reply to @4me "Hi Chuck I agree ct and mri Alscans can be very stressful especially when you have..." + (show)
@4me

Hi Chuck
I agree ct and mri Alscans can be very stressful especially when you have to wait a week or 2 weeks to see the oncologist for the results.
I just had my 6 mo ct and mri on Monday .
I was in the Mri scanner for 2 hrs and 40 min.
Now I wait till next week to get results.
My oncologist doesn't release reports till you see her in person.
So its a waiting game.
M

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I just had my first 3 month follow up MRI, and they had me in that tube a long time too. It has made me paranoid! How were your results? Great I hope!

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1 reply
4me | @4me | Aug 30, 2023
In reply to @chuck138 "I just had my first 3 month follow up MRI, and they had me in that..." + (show)
@chuck138

I just had my first 3 month follow up MRI, and they had me in that tube a long time too. It has made me paranoid! How were your results? Great I hope!

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My results came back great.
How about your results?

Did you have your mri on a wide board machine?
Really helps with the claustrophobia feeling.

Have a great Labor day weekend

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