Recurrence of dry mouth

Hi PathHill

Yes, I still experience sensitivity in my tongue and mouth and I'm 2 years post treatment.  My tongue constantly feels like I've burnt it on hot food.

I'm pleased to read your CT scan in February was clear and the docs are happy.

In terms of the sensitivity to the side of the tongue my first thought would be to check your tongue isn't rubbing against a tooth inadvertantly and causing it to be sore.

You mention you can't eat spicy foods.  I'm assuming that's because your mouth and tongue are too sensitive?  And the difficulty eating meat, is that due to your swallow function?  I can eat moderately spicy food but can't get meat down.

With regards your dry mouth, are you getting plenty of fluids to keep you hydrated?  I still use Biotene Mouthwash which helps me now I have a little saliva.  Lots of people swear by Xylimelts and also sugar free gum which helps to stimulate saliva so probably worth a go. 

I'm sure you'll continue to be able to introduce new foods as recovery progresses.

All the best.

Linda x 

Thanks for the reply Linda. The consultant recommended a visit to the dentist but they’re still only seeing emergencies here in Scotland. I don’t think my tongue is catching on a tooth though.

Meat & poultry texture is weird and they have no taste so not appealing in the least. I can take anything sweet - biscuits, puddings, chocolate - and probably eat too many sweet things. Interestingly cheese is fine too so it’s not all sweet stuff.

I drink loads of water every day as well as tea & coffee. My mouth was fine but seems to have started drying out very recently. I don’t think I’m drinking anything differently.

My next appointment is in December so will try and see what the docs say then I guess.

I can completely understand not enjoying certain textures of food in the mouth.  I was exactly the same but I think I am slowly improving with some things, especially as the taste of certain foods has also improved.

I'm the complete opposite to you.  I find sweet things more unappetising than savoury.  They still don't taste quite right, leave a horrible taste and can be difficult to swallow, although I do crave them!

Tea and coffee are both diuretics so they do dry the mouth out but I still drink them anyway in moderation as they're something I can enjoy!  I think it's definitely worth trying the Xylimelts and gum to see if they make any difference while you're waiting for your December appt.

Linda x

Hi Path hill Have you tried  xyimelts  night time I am 2 years post treatment and still use them. Meat and poultry only  came  good for me in the last  few months , rare rib eye and lamb were ok but chicken defiantly no the texture just wouldn’t go down. Casseroles were the same meat too hard to swallow If it’s any help I am still finding small improvement ps. I also had acupuncture for dry mouth ut helped immensely .

my blog is below it may give you tips I also use sugar free gum during the day tend to chew it then park it in gum and chew a bit then put in top of gum etc 

hang on in it does get better  baby steps 

Hazel 

Hi PathHill

Sorry you're in trouble but great that you've scraped through treatment and are in remission.

The chronic effects of RT always seem to be understated and it's only us fellow sufferers who seem to grasp how much they impact ct our quality of life. I too finished treatment around the same time as you and have had ups and downs with side effects. 

I can only agree with the others but I might add that you could perhaps explore acupuncture when you are able. There is a protocol for xerostomia called Auricular Acupuncture and I can say it has helped me. My salivary function is good but has improved in fits and starts with many a backward step. Even now 22 months on I have nights when I am constantly reaching for water and days when food tastes of nothing. My taste generally is OK but not in HD, if you like.

I'm a great believer in keeping saliva going and the more you use your glands the more they recover. 

I always have chewing gum to hand. I use Peppersmith from Amazon. It has xylitol as the sweetener and comes in mint flavours. If mint is a problem PUR do a bubblegum xylitol gum.

Do get your GP to check you haven't got thrush. It doesn't always manifest itself as described in medical text books and thrives on sugary sweet things. In fact I might be tempted to get a two week course of fluconazole anyway. In these Covid times it should be easy to get a prescription over the phone.

Best of luck and let us know how you get on.

Hi PathHill.

I completely agree with Dani - worth considering thrush as a contributing factor. I had a sore area on tongue for months after tonsil area had healed (tonsil tumour). I also have had recurrent thrush - for 3 years now! Firstly very obvious but then just red patches which became sore and now just intermittent sore areas in palate cheeks & tongue. All improve with fluconazole. There’s often little to see.

As far as discomfort with toothpaste - has anyone suggested Oranurse ? - I used it during treatment when my mouth was a mass of ulcers and it caused no pain at all then. Bit expensive, but worth every penny. 

The dry mouth is just a complete pain, especially if it seems to be worse now. Find what works for you - I use Boots dry mouth spray as it has a strong flavour which my saliva glands enthusiastically respond to, also Extragum (sugar-free) whenever I walk, cycle or work behind a mask and can’t sip water. Xylimelts have saved my life at night - never wake with dryness (unless I forget to use one, then appalling dry mouth which wakes me within 1-2hours!!)

It seems really unlucky to have these issues so long after treatment, but keep asking questions, someone will have answers.

Persevere, everything will improve

best wishes

Hilary

Hi PathHill

I have very few teeth as a result of my cancer so mainly rely on pureed or very soft foods.

I also find meat much too difficult to manage even in pureed form as the texture is just not right and even with lots of gravies I find my mouth still feels dry.

I also decided that relying on sweet foods too much was not such a good idea long term so am now eating home- made soup as my main source of food along with poached eggs and pureed fruit and custard and of course the obligatory Fortisip. I am managing to maintain my weight in spite of being unable to eat anything with texture.

It’s amazing how many soup varieties there are out there although I can’t manage any with meat in them even if pureed.  I puree the soup and find it very palatable and definitely  have a few favourites. There are so many on google and I have a great recipe book.

Have you tried home-made soups as I really recommend them? Definitely don’t go for tinned ones as their taste is a bit questionable. When I go out I take the soup in a thermos flask so always have something with me I can manage and yes the Xylimelts really help with the dry mouth.

My dentist recommended that I rinse my mouth with bicarb. during radiotherapy as this is quite gentle and I am still doing it although I manage Biotene dry mouth toothpaste as well now which seems quite gentle on my mouth.

Good luck hope you find something that you can enjoy eating. It does take time getting your head around it.

Lyn