Dry Mouth

Unfortunately this is a quite common side effect of the treatment. I am almost 11 months post treatment and I still have dry mouth. To help I use coconut oil, sugar free chewing gum and carry a bag of sugar free sweets. I also carry a spray of water with a few drops of glycerine. I find that warm drinks are better than cold drinks. 

Best wishes.

Hi Chicadee,

My husband is nearly 7 months post treatment and still gets dry mouth, at 9 weeks he still had large ulcers in his mouth so hang in there,  it is still very early days. He has found for dry mouth using a small water spray most effective at night and uses it the day particularly when talking . He also uses oraliieve dry mouth spray prescribed through his GP. He no longer needs to use these during the night but carries them with him in the day. He was told this week that improvements can continue for up to 3 years so he’s still hopeful to be able to eat enough calories to come off his feeding peg. I’ve done a little research where some have had improvements through the use of acupuncture. That is our next step. It’s definitely worth a try

best of luck

Chicadee16 said:

Can anyone tell me if the dry mouth gets better with time

Yes it does but 9 weeks is really early days. Recovery is a really long slog. You can expect major improvements in the first year and little ones thereafter

Chewing gum stimulates whatever salivary glands are still functional. The main glands that produce background saliva are the submandibular ones under your chin and these are absolutely hammered by RT and just don't survive.  RT usually spares one parotid under the ear and this is the one that responds to chewing food so chewing gum gets this working. There are lots of little glands dotted around the mouth and throat too.

Acupuncture really helped me and I started this at around a year. I wish I had started it earlier but it took that long for it to come up in a post here in the Community.I did have saliva but I was constantly chewing. Hated that.

I have a couple of posts in the blog

ACUPUNCTURE starts

ACUPUNCTURE update

Rather than using sticky gels at night get your husband to try Xylimelts tucked into his mouth. You can get them on Amazon.

I still use Bioxtra  mouthwash which is mild and emollient and I get that on prescription

Hope this helps

Thanks for your info, its very interesting to hear others' experience.  Do you just swirl coconut oil in your mouth? 

Thanks so much Beesuit for this wealth of information.  I read your blog about acupuncture, sounds very positive!

Thank you very much for your reply.  I will try the dry mouth spray.  Im sorry your husband is still using the PEG.  They are a boon to help with calorie intake though and we would've been lost without it.

Hi as others have said it’s early days although he may not feel like it. It’s does slowly improve I too never thought my mouth would be moist sgsin but it is. I no longer rely on copious amounts of water. I still have sugar free gum in my bag and at night I use 1/2 a xyimelt every night. Make sure he is hydrated and carry a water bottle spray to use instead of  constantly drinking which can wash away what saliva he has it’s a fine balancing act. . Thus tip came from a late side effects hnc nurse.  I had auricular acupuncture for a year which I do say kick started my saliva but you must make sure it’s auricular acupuncture. I had to pay for this treatment. I also use bio xtra mouthwash on prescription. 
the acupuncture doesn’t work for everyone but it did for me. 
Hazel 

Hi Chicadee

I still suffer from dry mouth after my last op and radiotherapy in 2019. Initially I found Xylimelts worked very well at night and would highly recommend them. However after my last op in 2022 I could no longer use them as the skin inside my mouth broke down very easily and the Xylimelts then caused ulcers from rubbing which was a real pity.I have now taken to using the gel and find if I only put a dab on from a cotton bud it works quite well and you don't get that gluggy feeling if you put on too much. Biotene dry mouth spray helps a bit as does sips of water. I use Biotene dry mouth toothpaste and Biotene mouthwash which all help a bit. I go everywhere with a bottle of water.

Don't know if my mouth is maybe drier than some as I have had 2 lots of radiotherapy over the years.

Lyn

I swirl it and then I swallow it. My throat gets very dry and I find that swirling and swallowing some coconut oil  especially before going to sleep helps my mouth and throat throughout the night . I stay asleep and don't wake up to have some water. 

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I might try that, thanks Fab1 

I used to be quite adept at tucking myself in to keep my mouth closed at night. Now I'm pretty relaxed I mouth breathe and snore! so I have to sip water a couple of times a night.