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#201909 05-24-2023 12:12 PM
Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
Patient Advocate (1000+ posts)
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"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
I have had 3 oral cancer surgeries. 2004, 2007 and 2022. I have had 62 radiation treatments from 2004 - 2007 and another 5 “radiation love taps” to my partoid gland in 2022.

I have a fountain of saliva and while the radiation love taps to the gland helped tremendously - it didn’t last long, and it caused a sore in my throat so I don’t want to do that again.

I currently use a water pik with alcohol free mouthwash a couple of times a day (using the GENTLE tips and lower pressure of course) plus a suction machine plus the pink foam sticks to clean my mouth. I go through Kleenex Handtowels like I own shares.

I cannot swallow at all due to side effect if last surgery which removed my bottom left jaw plus some of the back of my tongue. I am ok with the PEG tube feeding (except for all the CLEANING of everything- which seems to take a great deal of time) but this fountain of saliva is driving me crazy. I hate that when it is bad, if I bend over I drool onto surfaces. Constantly wiping my mouth or trying to clear my mouth is horrid.

I think I can deal with the thick mucus much easier than this excess saliva. The water pick, humidifier and getting lots of liquids in your dirt really help reduce that problem. But this Saliva!!!

Tell me about this Breathe Right Roll on I heard about on Facebook?? Apparently you roll it onto the skin around your ear and it slows the saliva. I have never heard of that.

Has anyone tried the medication Glycopyrrolate (Cuvposa) or any other? Has anyone had a saliva gland removed?

HELP!

Donna (Pandora 99).


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Joined: Jun 2021
Posts: 42
Likes: 7
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jun 2021
Posts: 42
Likes: 7
Donna, sorry for your situation. Wish I could could give you some input on help. really can't. Just wanted to know I was thinking about you..Hope you fine the solution!!!

Steve


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great

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