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Myxofibrosarcoma: What treatments did you have?
Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)Comment receiving replies
Thank you. I, too, think of how lucky I am to still have both legs even though it continues to give me so many problems. If you don’t mind, I would be interested to know if you have neuropathy or other issues with your leg and how you deal with it. I also have Lichen Sclerosus, an inflammation, along my incision which causes a burning sensation. Night time seems to be the worst. The nightly symptoms are the same, however, relieving the pain changes. Some nights CBD cream helps and other nights just putting Aquaphar on my leg relieves that pain. Then other nights a wet cloth over my leg helps. The sun and hot summer days also bothers me with a burning sensation I am told that the radiation is the cause of that, however the Lichen Sclerosus doesn’t help either. I keep my leg covered at all times when I am in the sun. I bought those arm sleeves with sun protection and I slip it over my leg. I couldn’t wear compression sock because it caused too much pain until I cut off the foot portion. Now I can wear it for a few hours which helps when I am sitting too much. Any other tricks you can pass along to help with pain I would greatly appreciate. It’s sad to have others in the same boat as me, but it’s nice that someone else can relate to my problems.
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I noticed a lump on my calf when I was shaving. Went to the drs they said you must have bumped it and I said no didn't bump it.
It just kept growing. Had MRI nothing showed up. No one was worried at all.
1 1/2 years later went to vascular surgeon they thought it was an avm. So went into surgery when surgeon got in there he took sample sent it to be biopsies. I didn't know any thing until I went back a week later to get stitches out. Sacramento could not diagnose it they sent it to Boston where it was diagnosed myxofibrosarcoma.
My vascular surgeon saved my life.
No surgeon's in SMF
So went UCSF during the peak of Covid
Did all appts via zoom with surgeon, radiologist, oncologist and plastic surgeon. Had 2nd surgery Dec 2020 No one was allowed in hospital except patients. I met with orthopedic specialist few minutes before surgery they weren't sure if the could save my lower leg .
After removal and margins clear they administered brachytherapy into my open incision ( a large amount of radiation) then the plastic surgeon did skin graft and closed up my leg. Then 6 days hospital with full leg boot I had to wear 24 hrs a day for a month.
They wanted me to go to rehab because no walking on leg for month because skin grafts do not take if walking on leg i said no. They said we don't send people home and I said I'm going home. I had to prove I was strong enough to go home. Then a month in bed.
Except week later back to ucsf to get stitches and drain out.
Then 4 weeks later more radiation 6 1/2 weeks.
They used a bolus on my calf over skin graft and most of calf to make it burn more to make sure they get everything.
Turned skin graft to mush. Very painful.
I agree with you with the pain at nights are the worse can't have anything touching my leg. Can't have heel touching anything. They had to remove part of my Achilles tendon. I have the same amount of pain I had after surgery and radiation
Drs say it's as good as it will get. Its been 3 1/2 years since my last radiation treatment. My pain reminds me how lucky I am. I wear juzo support stockings they hurt but need them to control the swelling. Some days need a cane. But I keep going no matter what just like you. Don't take any pain pills they just don't help. Have tried cbd creams aquaphor nothing really helps.
Did your surgery effect your foot?
Mine feels very numb and tight alltime also. also.
Sorry so long.