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 30, 2023

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

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

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)

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

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.

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)

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

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)

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 🤞

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.

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)

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.

chuck138 | @chuck138 | Jun 28, 2023

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

The CT came back clean. Next MRI is late August. As far as Im concerned, I am cancer free till late August, then we'll deal with whatever happens then.

In the meantime, Im going camping. 🙂

4me | @4me | Jun 9, 2023

In reply to @chuck138 "I thought when I finished the radiation, that was the hard part. Boy, was I wrong!..." + (show)

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

chuck138 | @chuck138 | Jun 8, 2023

In reply to @4me "Hi I also have myxofibrosarcoma in right calf. Took 1 1/2 years to diagnose it. I've..." + (show)

I thought when I finished the radiation, that was the hard part. Boy, was I wrong! My leg turned to hot mush as well. It's finally healed overall, but the 2 weeks after radiation were definitely tougher than the actual treatments for me.

I had a follow-up ct on my lungs today. I am a little surprised at how stressed it has made me.