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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)

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@crystald

When my tumor was removed they had to also remove a muscle and the Fibula bone leaving just stubs connected to the knee and also the ankle. They put two screws in my ankle to keep my stub in place and foot from dropping severely. Unfortunately since March I have one screw loose and one appears to be broken. I have a lot of numbness just above my ankle and basically my whole foot. When it isn’t numb I have nerve pain shooting through my leg where I had a radiation ulcer. I had to have a skin graft done over the ulcer. I don’t have much pain right now from the faulty screws, but I am sure the pain will happen at some point. I also have a bad bunion on this same foot. That ads to the pain level, too. I do take gabapentin, but cut that in half in May and I’m able to live with that. I lost the weight I had gained from the medicine and I am sure that has helped with my movement. I try to keep up with exercising and riding a bicycle. Some nights the pain just wakes me up and then I try my different remedies and see which one will allow me to go back to sleep. The next day I either push through or just decided I need a day of rest. I have a wonderful husband that doesn’t question what looks like laziness. He supports me in every way. I hope you, too, have a good support system. I also looked at other cancer patients when I went for my treatments. Some were so depressed and devastated by their disease and then there were a couple patients that stood out. They would be laughing and joking with the nurses or any one next to them. I knew I wanted to have that attitude because not only was it good for me, but the people that surround me. I am not going to let cancer define my life as being a victim of this disease. Sorry this is long, but it is good to vent sometimes.

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Replies to "When my tumor was removed they had to also remove a muscle and the Fibula bone..."

I agree with you on not letting our cancer define us.
One can be depressed and down all the tine our choose to move on.
I was just so grateful there was treatment for my cancer since it is such a rare cancer.
I am also very grateful for my doctors.
I try to support all fundraisers for the research of sarcoma.
Since so little money goes to Sarcoma.

I didnt and dont have time to dwell on my cancer I'm a care giver for my husband who has Parkinsons and can't walk anymore and my 93 yr old father who lives with us.
Thank you for sharing more of your journey with me.
You have been through a lot and you just keep going. You have had some painful setbacks but you never give up.
Sometimes I think think the setbacks make us stronger or we just see how strong we are.

What will you have to do next with the problems you are having with the screws in your foot?
Do you have to do routine scans ct and mri?
What state do you live in?