Dry Mouth

Hi there,

My consultant explained to me the following about saliva glands.  He said that there are three pairs of major ones and any number of smaller ones.  The radiotherapy kills them all off for a while, and as the mouth heals then the saliva glands begin to heal too, largest ones first.  Some of the smaller ones may never come back, so saliva may not return in the quantity that you used to have, but it should come back.  It may take some months, though, so be prepared.

Useful products in the meantime are Boots Dry Mouth spray (which can be watered down if it is too strong), and Xylimelts.  These are life changing for me, in a good way, and I wouldn't consider a night without them.

Something that I found, which was unexpected, was that the saliva glands restarted producing liquid before the exit into the mouth had healed properly, so the saliva had nowhere to go.  After every meal, I ended up with hard, painful cords of trapped saliva along the insides of my cheeks that would take hours to go away again.  It was very odd, but made perfect sense once he explained it.

Another thing that the consultant said was that the radiotherapy burns away the mucous membrane that lines the mouth and throat, leaving a very dry feeling in there. It can recover (sort of), but everyone is different and therefore the level of recovery is very individual.

Finally, he was quite adamant that if it hadn't fully healed after two years, that was going to be all the healing that I was going to see.  He was absolutely wrong!  I am now 6 years out from treatment, and I am still seeing improvements now.

Good luck with the rest of the treatment, and with your recovery.  It will be slow, I'm afraid, but it will happen and in the meantime, just ask and people on here will have all kinds of creative ways of managing the symptoms.

Best wishes,

Josie

Hi Josie,

Thank you for your reply. Unfortunately the Xylimelts did nothing for me and I find the dry mouth sprays only help for a short while. My biggest problem at the moment, apart from not being able to eat, is sleeping. The dry mouth wakes me every 2 hours. I have a sip of water and some dry mouth spray but 2 hours later it wakes me again. I'm hoping someone on the forum may have discovered a "miracle" treatment! 

Best wishes and thanks again.

Chris

Hi Chris

There’s  no short cut at the stage you’re at in my experience. Your mouth and throat are at major hammered stage. I could do only what you are doing. Sips of water in the night and squirts of artificial saliva. I found AS Saliva Orthana the best. I still use it occasionally. You can get it on prescription. An alternative to Xylimelts might be Xyligel. This is a slightly gritty gel you can dab on your tongue and it should moisturise your mouth for a good few hours. 

When you can chew comfortably chewing gum might get your saliva going

i swear by it and use Peppersmith sugar free. Don’t try it yet it might be too strong

Good luck

Josie

you said in your post

Another thing that the consultant said was that the radiotherapy burns away the mucous membrane that lines the mouth and throat, leaving a very dry feeling in there.

Im astounded!

That is exactly me!

My dentist says I have more saliva than a lot of Radiotherapy patients he sees 

To me my mouth feels really dry

You have explained it perfectly

Why is getting information from some oncologists like pulling teeth? 

Thank heavens for this forum and thank you Josie

I think it maybe because doctors find it difficult to admit that there is a lot about cancer they do not understand. 

Thanks Beesuit.

I will try your suggestions. I cannot believe how badly this has affected my quality of life!

Chris

Chris 

it does. It’s absolutely pants. By the stage you are at and for a few weeks after treatment finished I was often reduced to self pitying tears. It’s not surprising but I assure you it does get better and all this will be just a painful memory. 

Its hard to imagine you will ever be well again. You will, a different  kind of well but well enough. 

Take care

Thank you Beesuit.

You are quite right. At the moment I am struggling to remember the positives to all of this. Eating and sleeping are so important to our quality of life. I have not been able to eat or get a good night's sleep for about 3 weeks now. Oh well, as they say, take it a day at a time.

Best wishes

Chris

Hi Beesuit,

It took me about a year to extract that little gem from him, following visit after visit of pestering. To be honest, I suspect they're not really interested in the side effects that we suffer; all they worry about is whether we have a recurrence.

I do everything I can to share the knowledge that I have acquired over the years, and thankfully it is proving useful in more ways than I would have ever thought.

Josie x

Hi Chris this is Hazel 14 month post radiotherapy for tonsil cancer . The xymelts by yiu May have tried them too early I did ronstart with yiu need a bit of saliva for them to work with , now I use half of one every night and honestly I get at least 4/4 hours before a sip of water give me another 3 hour session. Break one in half with finger nails don't try knife or they shatter. 

I also have had 5 sessions if acupuncture paid privately and yes I do believe it has helped me , ok it doesn’t help everyone,Anither gel I used was Biotene oral mouth gel prescribed by dentist .

pareon the pun but yes lack of saliva really sucks , niw I have far more better days than bad days ,will always have to carry water with me but niw can eat a meal without the need most times for liquid to wash it down with.

good luck

Hazel