Hello to the group

Hi JoeQuyFredo100 

Well done on hitting that six month milestone. Six months was when I felt happy about my recovery though I realised I wasn't out of the woods yet and there were improvements to come.

Chewing gum gets the surviving salivary glands working. You can chew up a piece if gum and park it in your cheek, having the odd chew as necessary. A pocket water spray is really helpful too. I always felt it was much better than washing away what saliva I did have  with sips of water.

There are quite a few saliva substitutes on the market. it's question of seeing if any suit. I get Salivix pastilles on prescription from my GP along with Bioxtra mouthwash to freshen my mouth when it feels yuk.

It might be worth exploring auricular acupuncture. It helped me and there are a couple of entries in my blog.

I can't help with the tongue though. Have you exercises to do?

Thrush is common and you need fluconazole not nystatin; sometimes a two or even three week course. Keep away from sweet things, keep your mouth moist and hopefully it will disappear after anti fungal treatment.

I am over five years now and all is well. I do have a dry mouth but it's not that bad. 

I have a flouride varnish every three months, use Duraphat toothpaste and occasionally resort to chewing gum, but not often. I do rely on the mouthwash to keep my breath fresh.

Hi Joe 

I had chemo radiation 33 rad - proton therapy and 2 chemo. I had all the side effects you mentioned. There is medication to manage the thrush so speak to the professionals working with your follow up. The dry mouth took months to improve but in my case it did. I used oraleev spray and have this on prescription.  I would say I am left with about 70% production and usually eat meals with a glass of water. I also take a glass of water to bed and sip on this periodically through the night and got used to not disrupting sleep. Things take time joe. I have found this group immensely helpful and there a lot of valuable experience on hear. Hood bunch of people so keep accessing it.

Cheers Shaun 

Hi Joe

Welcome

Great new that the scans were clear

T2N1M0 T0nsil cancer HPV16+ Chemoradio finished June 2023

Treatment is very challenging and the side effects can persist for some time afterwards, my dry mouth persists after 16 months, plenty of hydration and use of Biotene gel at night helps (daily Guinness 0.0 is a little treat), use of Benzydamine HCL oromucosal spray also helps tongue/throat tenderness, I had 3 episodes of oral thrush successfully treated with NYSTATIN, still get a few wee niggles ...most of us do...appetite and taste should improve.....things should keep improving over the coming months....takes time.

Did you have a feeding tube?

Take care

Peter

Hi Joe, welcome to the group. I had the same treatment as you, mine was for tonsil cancer. I'm now nearly 7 years post treatment, and even now things change from time to time ie some foods can taste different from one day to the next, tingling tongue, occasional sore throat, all which I put down to the as they say. "The new normal". Recovery can be a long drawn out thing, but things will improve for you as you go along, you will get there.

Ray 

Hi JoeQuyFredo100

Welcome to the group,Fabulous news that the tough/brutal treatments have worked!

I was diagnosed T4  now10.5 mnths post treatment and had oral thrush several times only Fluconazole and Nystatin for2/3 weeks helps clear it ,most people’s mouth and tongues become less prone to thrush/mouth infections as time goes on …. but for  some of us things can linger and still be troublesome.

My advice is try finding things that work for you … we are all so different in what helps our symtoms … i find Orilieve mouth spray easiest to tolerate, using a small water spray and I take a bottle of water everywhere. 

I struggle with gum and pastilles( due to having so many teeth removed prior to treatment) but both seem to help.

Ask your Speech and Language for more exercises to help you with your stuff tongue.

Someone is always here to try and support you or answer any questions.

Debbie

Thanks Shaun. Your advice is really helpful. I know its early days in my recovery. I should have joined this forum ages ago. I guess I ran out of ideas on how to manage these symptoms.

Thank you Debbie. Its great to speak to people who have experienced similar symptoms. I struggle with the pastilles and gum as my mouth is too sensitive. A few people have recommended a small spray bottle so have ordered one. Thanks for your reply.

I bought some travel bottles (£1 from poundland one of them is a spray fill it with water and take that plus bottled water everywhere. Hope it helps tongue becomes less sensitive with time 

Debbie