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#174683 11-30-2013 07:51 AM
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n74tg Offline OP
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I was talking to another survivor about the horrible taste that lives in my mouth most of the time. Nothing seems to help get rid of it and it makes all food taste equally horrible.

She said a friend of hers used lemon drops to get rid of it. I picked some up, so far they seem to be working.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #174694 11-30-2013 01:45 PM
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Whatever one puts in their mouth to suck on to mask the off-taste or to promote saliva or for whatever reason, make sure it has no simple sugars as we are all subject to much higher dental disease.

I am still doing the background work to determine the efficacy of the various options thrown around as effective to combat post tx tooth decay. I'm not pursuing bone or tissues caused by radiation as there is not as much one can do to slow or alter the progression of ORN and other bone related issues.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
n74tg #174701 11-30-2013 08:08 PM
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Posts: 559
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n74tg Offline OP
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I guess I forgot to say that they are sugar free lemon drops, sweetened with splenda. I wish I could find some xylitol sweetened drops, but so far no go.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #176745 01-20-2014 05:08 PM
Joined: Nov 2013
Posts: 9
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Dear Don... What do you mean by what you said above... I quote
"I am still doing the background work to determine the efficacy of the various options thrown around as effective to combat post tx tooth decay.

I'm not pursuing bone or tissues caused by radiation as there is not as much one can do to slow or alter the progression of ORN and other bone related issues"

What??? What is ORN and what do you mean by that last sentence? Where can I go to find out more?

I have had 35 sessions of radiation specifically in my mouth for AdCC... and now I need to know what to expect with regard to tooth decay and how to deal with serious dental problems.

You have really pushed one of my buttons with your post and now I think I need to know more. A lot more.

Thank you in advance for your kind response and what ever info you have to share with me.

Thank you for your great work. I so appreciate that you are doing this both for yourself and sharing it with others.

Best in 2014 to you and yours


Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
n74tg #176746 01-20-2014 05:15 PM
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Hey Don...

Looks as if we are neighbors of a sort. I too am in the SF/Bay Area... specifically in San Leandro... near to Oakland and Hayward.

I had my surgery done at UCSF on Post St., in San Francisco.

Very experienced surgeons. Loved those guys. My radiation treatments were done close by in Castro Valley... not at all crazy about THAT doctor. He gave me very little info about the radiation, what I could expect and what my future dental and oral problems could be.

So....! I am left knowing that I will never be able to have dental surgery again... and that is about all I know.

Anyway.... howdy neighbor... and let's connect via this website, sooner rather than later.

Thank you again for sharing what you know. It's a huge help for me, that's for sure.

Best to you and let's have a healthy new year!!!

Xantippi


Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
n74tg #176755 01-20-2014 09:34 PM
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Hi Xantippi,

Yes we are indeed close neighbors - I'm on 24 between Oakland and Walnut Creek. Grab a coffee soon.

"I am still doing the background work to determine the efficacy of the various options thrown around as effective to combat post tx tooth decay.
What happens during radiation is the teeth and jawbone become weakened. It is vitally important to take the best care of your teeth and gums to slow and minimize further weakening of the teeth. My understanding is tooth decay caused by radiation hits the teeth along the gum line. So, you really must brush and floss well to keep the teeth free of particulates as well as keep the gums strong and healthy.

Sugar is just plain bad for your teeth so stay away from sugary items, especially candies and such that many folks use as they try to promote saliva or minimize dry mouth.

"I'm not pursuing bone or tissues caused by radiation as there is not as much one can do to slow or alter the progression of ORN and other bone related issues"

Whatever damage is done to the jawbone during radiation is a done deal. From my research there is nothing one can do to minimize the chance of bone related disease down the road. There are those who end up with jawbone replacement and other significant procedures to deal with failed bone issues.

What??? What is ORN and what do you mean by that last sentence? Where can I go to find out more?

ORN stands for Osteoradionecrosis - look at this link on the site.

Good luck,
Don



I have had 35 sessions of radiation specifically in my mouth for AdCC... and now I need to know what to expect with regard to tooth decay and how to deal with serious dental problems.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com

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