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Maureen, Volunteer Mentor
@alpaca

Posts: 203
Joined: Nov 17, 2016

Saliva and dry mouth

Posted by @alpaca, Dec 5, 2017

Many of us have this problem. Three years after RT and lots of talks by oncologists at our meetings and I’m still learning new details about this side effect. Some people have no saliva for life because their glands have been wrecked by the treatment, some recover some function as late as 2 years after (is that right?). Most people though have to manage a more or less dry mouth with constant to frequent sips of water or gels and sprays.
Even worse is what lack of saliva does to your teeth. I’ve learnt that normal saliva is continually building up the teeth and that without it we are in danger of rampant dental decay without extra fluoride treatment or heroic effects to keep out mouth acid neutral.
How do other manage this problem? What tips do you have?

REPLY

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @merryinman0811 @udderplace @carebear Hi folks. I still have my training wheels and forgot to tag people who might be interested in this topic.

My husband had his first round ot RT in the fall of 2015 at Mayo jville. Before treatment began he was sent to a dentist to be fitted for fluoride trays, with directions to use them every day. He has since had two more rounds of RT. He is not compliant with the daily floruide, but probably 2 x week. I make an appt with our family dentist every six months. (Give him 24 hrs notice, so he can’t back out)

He tried a new product called SalivaMax rinse which showed promise, but after a couple of weeks it gave a metallic taste and he stopped using it. Maybe it would help someone else. It is prescription: http://www.forwardscience.com/salivamax

@gaybinator

My husband had his first round ot RT in the fall of 2015 at Mayo jville. Before treatment began he was sent to a dentist to be fitted for fluoride trays, with directions to use them every day. He has since had two more rounds of RT. He is not compliant with the daily floruide, but probably 2 x week. I make an appt with our family dentist every six months. (Give him 24 hrs notice, so he can’t back out)

He tried a new product called SalivaMax rinse which showed promise, but after a couple of weeks it gave a metallic taste and he stopped using it. Maybe it would help someone else. It is prescription: http://www.forwardscience.com/salivamax

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I’ll look into that. We are always trying new products. We have Oral 7 and Xerostom – Xylimelts sound good. It’s hard to be compliant with these things when they cause discomfort. And the dentist! I see a hospital dentist but also a hygienist who is my salvation. So thorough.

Hi Maureen,

Thank you for bringing this RT side effect to the table. I am one of the ones that has not regained saliva production after RT. My treatment was almost five years ago, and when it seems I am forgetting about it, I wake up with my tongue glued to every side of my mouth, like a piece of cardboard. I have a tube of gel by my bed, and promptly squeeze some in my mouth and it seems as if my mouth reconstituted, kind of like dried mushrooms do. In wintertime, when I stay mostly inside, this happens in some part of my mouth during the day. Tea dries my mouth terribly, so I drink iced coffee or hot cocoa. Water tends to dry my mouth too. Go figure!
As far as tooth decay, I have been spared. RT affected my gums, and by retracting, I have lost four molars on my right side, and I know I will loose the fifth. All my other teeth are very healthy, and my gums too. I also did the fluoride trays for about a year, though my daughter was adamant for me not to use fluoride because of bone loss. So I quit doing it; but I go to the dentist every four months for cleaning, and she gives me a fluoride varnish each time. I must say that I am very careful about cleaning my mouth after each meal. You could say I have the stock food to remind me at each meal. So, I use the water peak after each meal. I also use this little brushes between my teeth, and I brush thoroughly every night with an “organic” tooth paste.
There is this chewing gum that was gifted to me by a dentist friend. I have not used it because I do not chew gum, period, so I have a spray little bottle in my purse and in the car. I do not use it a lot, I think because I have learned to live with dry mouth.
I know I have said it many times, but I must mention it again: I juice at least once a day. I include lime or lemon with peel and all and ginger. Just the thought of it, makes my mouth water. I would love to find out if there are other foods that promote saliva production. By the way, the corners of my mouth are getting kind of sensitive. Do you think my saliva is getting acidic? I will ask my dentist tomorrow. I have a cleaning appointment at 11.
Well, I would love to hear about your experiences. Together we will make it easier to get used to our new normal.
Greetings, Loli

Thanks Loli. I must try the juicing. The corners of the mouth are sometimes as issue for me too. My GP recommended zinc ointment to protect them from my saliva – I had thrush at that point too. The dermatitis went from the corners of the mouth and extended down the wrinkles on the side. Not a good look but it didn’t last long.
I have heard that water dries out the mouth and gel certainly helps and last longer than water. However, having water also helps me speak more clearly. It seems to irrigate my stiff tongue so that talking is not such an effort.

My teeth were already problematic and the radiotherapy finished many of them off. Seem stable now though. I have enough to hold a partial metal denture.

We don’t use the fluoride trays in NZ as a rule.

I keep meaning to do more research into Xylitol which sounds almost as good as fluoride and better for us, maybe? Best wishes.

My husband is 15 years out from tonsil cancer with radiation. He is unable to eat anything and uses a feeding time, he had all his teeth removed and gets really thick dry mucus buildup in his mouth. Takes a sip of jack Daniels and it loosens this mucus so he can cough it out. The Jack is the only thing that will cut through the mucus.

Hi @norpel1313 and welcome to Connect. You’ll notice that I moved your message to this existing discussion about saliva and dry mouth where you’ll meet others talking about coping with dry mouth. I’d also like to introduce you to @mrsjhagen18 who had tonsil cancer, and @adriennef who just recently had the feeding tube removed.
How did you discover that Jack Daniels works for your husband to loosen the mucus?

@norpel1313

My husband is 15 years out from tonsil cancer with radiation. He is unable to eat anything and uses a feeding time, he had all his teeth removed and gets really thick dry mucus buildup in his mouth. Takes a sip of jack Daniels and it loosens this mucus so he can cough it out. The Jack is the only thing that will cut through the mucus.

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The home remedy! There’s no easy way to deal with mucous although I’ve heard of fizzy soda water being effective. There’s surprisingly little good medical advice for these ongoing issues so well done for finding something that works for him.

Hi. I have been using Prescription cevimelene 30 mgs. for dry mouth. It is expensive and my insurance doesnt cover it. Go figure. But I pay for it and seems like it helps.

@norpel1313

My husband is 15 years out from tonsil cancer with radiation. He is unable to eat anything and uses a feeding time, he had all his teeth removed and gets really thick dry mucus buildup in his mouth. Takes a sip of jack Daniels and it loosens this mucus so he can cough it out. The Jack is the only thing that will cut through the mucus.

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I also dealt with a mucous that was difficult to remove. When I had my trach tube, I had a device that would suction to mucous and saliva out. I wonder if your husband might benefit from something like that? I apologize that I don’t remember exactly what it was called, but it worked well! If I remember correctly, I rented it from a medical device providers. Has the feeding tube been manageable? Has your husband been able to adapt to using it for nourishment? Also, big congratulations to him (and you!) for 15 years of survivorship!

@jano

Hi. I have been using Prescription cevimelene 30 mgs. for dry mouth. It is expensive and my insurance doesnt cover it. Go figure. But I pay for it and seems like it helps.

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Have you tried Biotene? I’ve found their products to help a bit.

@jano

Hi. I have been using Prescription cevimelene 30 mgs. for dry mouth. It is expensive and my insurance doesnt cover it. Go figure. But I pay for it and seems like it helps.

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Hi. I use it each night when it is the worse. Thank you.

@jano

Hi. I have been using Prescription cevimelene 30 mgs. for dry mouth. It is expensive and my insurance doesnt cover it. Go figure. But I pay for it and seems like it helps.

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Sounds like nothing works clearly and definitively. I find the Oral 7 gel helpful during the day and on long walks.

@colleenyoung

Hi @norpel1313 and welcome to Connect. You’ll notice that I moved your message to this existing discussion about saliva and dry mouth where you’ll meet others talking about coping with dry mouth. I’d also like to introduce you to @mrsjhagen18 who had tonsil cancer, and @adriennef who just recently had the feeding tube removed.
How did you discover that Jack Daniels works for your husband to loosen the mucus?

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He just tried it by chance and it is very effective. He will never be able to swallow and the works wonders to help get rid of mucus

@norpel1313

My husband is 15 years out from tonsil cancer with radiation. He is unable to eat anything and uses a feeding time, he had all his teeth removed and gets really thick dry mucus buildup in his mouth. Takes a sip of jack Daniels and it loosens this mucus so he can cough it out. The Jack is the only thing that will cut through the mucus.

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Sad to say , he is losing this battle after all this time but the jack Daniels suits his needs well

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