Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Dry Mouth

chrisuk1
Posted by

I am 5 weeks into 6 weeks of radiotherapy for Parotid gland cancer. My taste buds have gone and so has my saliva. I have read that the saliva can take a very long time to return. Has anyone got any hints and tips on how to speed up the saliva?

JosieFromGlastonbury

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

chrisuk1
Posted by

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

Beesuit
Posted by

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

Beesuit
Posted by

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

chrisuk1
Posted by

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

chrisuk1
Posted by

Thanks Beesuit.

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

Chris

Beesuit
Posted by

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

chrisuk1
Posted by

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

JosieFromGlastonbury

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

RadioactiveRaz
Posted by

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 

RadioactiveRaz 

chrisuk1
Posted by

Hi Hazel.

Yes I think you're right, the Xymelts need some saliva to work. When I tried them they didn't melt at all. What has helped me get through the night is "Sula Sugar Free Mint Humbugs" from Sainsbury's. I just pop one in my mouth when I go to bed and it keeps my mouth moisturised for about 4 hours. Stops me getting dry when driving to the hospital as well.

I've been reading about a supplement called "D-Limonene". They've been doing tests in America and it's showed real promise in helping dry mouth. You can buy it online. It's made by "Jarrow Formulas" and "Swanson". I'm going to give it a try. It's safe, it's made from orange peel!

The radiotherapy has now made me totally deaf in one ear. They said it "should" clear up when I finish the treatment, but no guarantees! I am so depressed.

All the best,

Chris

RadioactiveRaz
Posted by

Hi chris thank you will have a look at that. Be careful at night with a sweet as the xymelts dissolve ,but whatever works is best for you. Good luck with rest of treatment and recovery .glad you are still managing to drive.

Hazel x

RadioactiveRaz 

TTIGGY
Posted by

Hi, I also had Parotid Gland Cancer operation and radiotherapy about 7 months ago.  I found that the xylimelts were ok for a while but agree with sentiment on here that a mouth full of the Biotene Gel really helps overnight.  Smearing it on the inside of the cheeks with my tongue and on the roof of my mouth has really helped.  The good thing about Biotene is that you can get it on the NHS, unlike zylimelts.  The other thing that has helped me enormously has been a humidifier in my bedroom overnight, particularly now that the central heating is on in the house.  

My saliva flow has got better month on month and I go every 3 months to my dentist who applies a fluoride treatment to my teeth to help to stop any decay whilst my mouth is dry, so far it is working well. 

TTIGGY

chrisuk1
Posted by

Hi TTIGGY.

How are you doing now? I've just read your "about me" and was wondering how your teeth were. I was also told I had to have 4 teeth removed before the radiotherapy. I was devastated because I had paid a fortune to have those teeth restored. I went ahead and had them removed but it was awful and caused me lots of problems. I've often wondered if it was really necessary.

I had a cancer called "Adenoid Cystic Carcinoma" on my Parotid gland. Misdiagnosed as "harmless" for 4 years unfortunately. What type of cancer did you have if you don't mind me asking? And how are you now?

Chris