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#201771 02-09-2023 12:24 AM
Joined: Feb 2023
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Joined: Feb 2023
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12 years ago I had legions come up in floor of my mouth. Thet came up same time I had shingles.Doc went I and cleaned it all out. It was fine for about a year. Biopsy showed nothing a year later it started coming Back. Was sent to another doc that did lazer.again Biopsy showed nothing. After that I had 2 more layers done . Never was I tested for HPV. They just say that it was what it looked like.aA year later it was backing again. Was put on advastin for 2 years. It really helped but if I skipped one I'd back track and it would get worse. In the mean time I had a spot come up on my tongue and what was in floor of my mouth busted through to front and I lost 2 teeth. Biopsy done on both places. Now it's cancer. Surgery was scheduled in Dec 21. Took tabula to rebuild my Jawand skin graft from my leg. He Also took about 1/3 of tongue . He said he got it all but I did have a consultation set up with radiation doc and chemo doc. A week after I got home the graft on my leg disintegrated. I end up have 2 more grafts. By then my window had gone for chemo and radiation. They say there's nothing I can do until it comes back. None of this ever showed on a pet scan. I've had 3 so im confused about why? My tongue doesn't work right and I can't work food to the back of my mouth. I also have a huge big hump in the floor of my mouth that forces everything forward. Food and saliva.i have way to much saliva during days..a constant dribble and at night laying down its so dry my tongue sticks to. The roof of my mouth.Its been a year and 2 month. My speech is not improving and don't know if I'll ever be able too .Any advice?




j

Joined: Sep 2019
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Joined: Sep 2019
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Hi Carolyn welcome to the group,you didn't say if you had this done at big cancer center or at ent facility,if it wasn't done at ccc I would get another opinion from big cancer center.


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