Myxofibrosarcoma: What treatments did you have?

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

Hello 4Me, thank you for your reply. I had a high grade tumor which was located on the left lateral chest wall right under the arm pit. I completed 2 surgeries they removed tumor and some of the latissimus muscle. I am currently going through a 6 weeks radiation treatments at this time.
I also heard the chemo is usually not as a treatment with this type of sarcoma but my oncologist stated they would also like to treat it with chemo. Searching for anyone else being treated chemo as a option.

Jonezzi, I believe that @marshelle had chemotherapy for myxofibrosarcoma that had metastasized to the lungs. Do I have that right @marshelle?

@jonezzi, has your sarcoma remain localized?

Hello @4me

I am so pleased that you came back to share a bit about your journey with Myxofibrosarcoma. It appears that you have regular follow up now. That is great!

I had not heard of having radiation during a surgery. Is this a procedure that is done specifically for Myxofibrosarcoma?

If you are comfortable sharing more, what symptoms led to the diagnosis of Myxofibrosarcoma on your leg?

Hello 4Me, thank you for your reply. I had a high grade tumor which was located on the left lateral chest wall right under the arm pit. I completed 2 surgeries they removed tumor and some of the latissimus muscle. I am currently going through a 6 weeks radiation treatments at this time.
I also heard the chemo is usually not as a treatment with this type of sarcoma but my oncologist stated they would also like to treat it with chemo. Searching for anyone else being treated chemo as a option.

I'm 49 and I have a high-grade myxofibrosarcoma. Found it in my thigh around Thanksgiving 2022. Diagnosed in January, and had it removed on Valentine's day, 2023. I am now finishing up 6 weeks of radiation (last dose is on Monday).

They did a ct of my lungs, and they looked clean and were able to get clean margins on surgery. However, the margins were a little narrow in the deep part of my leg, so that's obviously concerning.

Even though this is scary stuff, I feel like many things have gone my way.
1) It hasn't spread (so far)
2) It was in a place where they could get at it (not on the bone, on a nerve, nor on an artery)
3) I am close to a pretty good Cancer Center, that actually has a sarcoma team. They have all coordinated well for you my care.

So far, the worst part has been these last 2 weeks of radiation. I am really tired all the time, and my skin is just a mess. That should all heal up though.

I am a bit worried about the monitoring going forward, but not too much. The way I see it, we have a monitoring plan, so we will deal with it right away if it comes back. Plus, there's nothing I personally can do about it, so I'm not going to shut down with worry. Can't worry about a recurrence away. Just have to get on with things, and deal with it if/when it comes back.

Does anyone else find it funny how, whenever Doctors and Nurses mention sarcomas, they mention how rare it is ?
Are we like, cancer hipsters because we have a cancer you've probably never heard of? 🙂 (I'm kidding of course)

Hi
I also have myxofibrosarcoma in right calf.
Took 1 1/2 years to diagnose it.
I've had 2 surgeries and during my 2nd surgery had brachtherapy and 2 months later 6 weeks of radiation.
I agree its a shame that there is so little information and k owledge of sarcoma.

Only 1 % of all cancers are sarcoma and there are over 100 subtypes of sarcoma.
I'm glad you have a good sarcoma team near you.The last 3 weeks of my radiation were tough too I had to have a skin graft after 2nd surgery and you don't want to do that and then have radiation.
My leg was like mush.
But I'm very happy to say it healed and was able to save my skin graft.

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.

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