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Saliva and dry mouth: Head and neck cancer and treatments
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.< r />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.< r />How do other manage this problem? What tips do you have?
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I had burning mouth syndrome and started the “pulling” with coconut oil and was very surprised that after a week or so my mouth felt much better and now I have no symptoms of BMS and I had it severe for several months. I had extensive dental treatment and I’m pretty sure there was nerve damage, in fact I have one crown that is sitting on a nerve but again at least for now I no longer have BMS. It affected one side of the gums, roof of mouth and tongue. Look up Pulling to see how it’s done. Good luck!
@hawkssr, you many wish to join members talking about burning mouth syndrome in this discussion group:
- Burning Mouth Syndrome (BMS): Anyone found any relief? https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
You'll find other discussions about BMS in the Skin Health group https://connect.mayoclinic.org/group/skin-conditions/
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1 ReactionGreetings to everyone… so I read through all the comments… my heart goes out to you all… I too been dealing with all those issues in different stages of my ‘after’ surgery and RT struggles…. You have probably read of the long difficult operation and transplant I had to endure… a long road ahead was set after that… Here’s some of what has helped somewhat… For the stiff jaw daily mouth/jaw exercises was a must initially, then after a few months, morning after getting up should become a routine thing to do… it helps but one should ‘talk’ even when alone in order to exercise the muscles and vocal cords… after months in the hospital I started using my throat for speaking which changes your voice a lot.. now five years later finally I have begun to sound like me… even though I still don’t have any feeling in the front portion of the outer frontal jaw/face area, kinda like being a puppet is what I feel like… the saliva or lack of it… for some fortunate ones it will come back but not 100% or even 80% and it will not be the same, so dealing with this becomes a challenge… water helps, juices help but without sugar and natural flavors, one can add gaseous water if needed, this does two things I have found, it moisturizes and aids in getting rid of most of the mucus/phlegm, but don’t drink it to often, it’s bad for the teeth…. I was strongly advised to not go to any Dentist, to go to a Specialist Dentist trained and knowledgeable with Oral Cancer patients otherwise one can suffer unwanted injuries or problems. Oncologist can normally advise on this… the suction pump seems like a good idea and I will follow up on this for sure..so thank you for reenforcing it for me… but please for your own good and health do try to have discipline in what has been suggested or prescribed unless or one will suf the consequences down the road…. Please if anyone has any more information, advice or tips… I am all ears… my very Best to you all…
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1 Reaction@ascc17, such a helpful post. I love the tip of talking even when you're alone to keep working the vocal cords. Did you ever try reciting poetry, reading aloud or singing? What did it feel like to finally recognize your voice again after so long?
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1 ReactionThanks for the question…. No, nether of the 3 ,,, but I do walk around the house talking to myself, weird I know!… I also practice talking in my mind, trying to remind myself how I sounded, visualizing it does help believe it or not… voice is still not the same though, pronunciation is mostly the problem… unbelievable what having missing teeth and a platinum plate does to the voice and mouth, it changes the way one moves the lips etc., .. and No, there are times I do not recognize my own voice, and you have to speak slower in order to pronounce the words correctly, which is really weird to say the least, so this in turn makes me self conscious wondering what others hear… but you have to fight through the frustration and just move forward… Life has given you a new perspective and opportunity so use it to its full potential…. But never feel discouraged, recite poetry, read at loud or sing if that’s what makes you happy… Life’s too short to worry about the things that can not be controlled….
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1 ReactionHere’s some insights into how I’ve managed both Dry mouth and Burning mouth… the first, … for the first two years I had to lay and sleep in a semi sitting position so that the little saliva I had moisturized the mouth, slowly I started getting rid of a pillow, then another until I could breathe and sleep in a more relaxed position… of course in order to do this I made sure to apply a moisturizer gel prior to laying down, then wake up some 3-4 hours later and do it again…. It’s not a perfect solution but it helps… don’t get me wrong, dry mouth is still there but not as severe…. As for Burning mouth, this was a problem at the very beginning and lasted for about 3 years, any kind of citrus or gas would burn my throat and mouth, so I stayed away from them… remember, the inner lining of the whole oral cavity went through some pretty nasty trauma, so it’s natural that problems would arise… but the body is a remarkable thing, it learns to cope and in turn with time it adapts to the changes… now I am ver conscious of what I can and cannot have, diluting everything with, say water or milk or yogurt helps a lot, it not only helps in swallowing but keeping the Burning mouth to a minimum if at all… but that’s just my way of dealing with it, you do what you must to keep moving forward, keep an open mind and stay strong and determined…. Hope some of this helps… All my Best to You and Yours….
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2 ReactionsI’m approximately 6.5 years out and still have no saliva. I’m assuming that I never will but I’ve learned to live with it.
I’ve tried the 3M spray, mouth rinses and Xylitol, none of these work for me.
As for dental; I see my dentist every 6 months. I also pay for fluoride treatments each visit and have a prescription fluoride toothpaste.
I brush and treat my teeth first thing in the morning, after each meal and a couple times throughout the day.
Drinking water throughout the day helps all of the above and well as the tremendous amount of water I need to get food down my throat.
Wishing you the best, message me anytime.
MOJO
The problem I have with Xylitol as well as sprays is they make my mouth more mucky.
I’ve also had prescription but they didn’t work.
For the past 6.5 years I’ve been relying on hot water rinses, water throughout my day and frequent brushing of my teeth with sensitive toothpaste and prescription fluoride toothpaste.
MOJO
Dry mouth is a regular symptom of certain medications for me. My muscle relaxers tend to do it to me sometimes. C b d at times does it. That's why I don't take cbd before I go to bed.
I have the opposite problem with hypersalivation. I have been up since 4 this morning from choking on it. It's sticky stringy foamy saliva every since I had covid last year. Mouth was cultured, I do not have thrush and it just showed normal mouth bacteria, but, this is anything but normal. I could water the yard for my husband. LOL. I have tried everything. Any suggestions are greatly appreciated. Hugs to all...