Tonsil cancer.

Hi first of all I'm sorry to hear you have joined our merry gang..there has been some great advice already...I had exactly the same cancer and treatment ironically...it is tough but highly doable...my main advice is try and stay fit as that really helps with the treatment.  I walked 8 miles a day to try and boost my fitness... secondly I tried to adopt a positive attitude...it's not easy but I had kids doing exams and was concerned they would witness their dad falling apart.... finally take someone you trust to consultant meetings as I had a tendency to only hear what I wanted to hear ..40 months after my treatment started I'm now back to a normal life... working and playing golf weekly.

Good luck and you've got this

Chas

I got same Xmas present as you! And I was 50 on New Year’s Eve! I’ve now finished radiotherapy and chemo and awaiting the dreaded scan but 6 weeks post treatment and I’m eating well and pretty pain free. Dry mouth a pain but hey no one said it would be easy. To anyone worried about treatment on here just take one day at a time and hang on you will make it!!! 

Hi everyone,8 weeks post treatment now & on balance everything is moving in the right direction. Got my scan booked at the dnd of June. Fingers crossed!

having a tough time right now as my body hasn’t reacted well to coming off the morphine but it’ll pass. My biggest issue is my dry mouth wakes me up at night & is dry all day. Any suggestions on how best to manage the dryness?

Hope you’re all keeping positive.

Hi Puliboy

I managed my dry mouth by chewing sugar free gum and using xylimelts at night 

Acupuncture really helped me. There are details in my blog. 

Hi Well done on getting ti week 8 Sadly dry mouth is one of the long-standing side-effects I still take water to bed with me even now nearly 4 years. Occasionally now in the night but I still use  it but every night half an xyimelt  Amazon and others  sell the,  It does slowly improve. I also had a course of a regular acupuncture and I also just chew orbit sugar-free gum especially in those early year less now. I did find that the acupuncture started my saliva glands.Thrcdry mouth now I’ve learned to live with it I woukd say most days I’m 95% normal mouth never thought I woukd say that  but it’s true,compared to those early Saharan desert feeling 

Plus I always had a Luke warm drink whilst east to help the food go down. Toast was easier than bread for a good whike well buttered. 
Hope  this helps Hazel 

I guess it’s dependent on just how much the RT fried your salivary glands, but I was just the same at your stage. My dry mouth was debilitating at the outset but it has improved over time and now I only wake up once or twice in the night to take on water - sometimes never.  When it was at its worst I used a humidifier (cheap from Amazon) next to my bed at night and chewed gum during the day - just the bog standard sugar-free supermarket stuff (Extra) which comes in tubs. Although I still have issues with dry or starchy food, eg chip butties, and need a glass of water to help it down, my dry mouth is about 90% resolved at 17 months post chemoradiation for tonsillar SCC. I still chew gum as its benefits are threefold: it helps produce saliva, it exercises your jaw and it helps clean your teeth. (It also helps reduce dog-breath late afternoon, but we won’t go there!)  As ever, patience is the watchword. 
PS, I never got on with Xylimelts but I know they’ve helped others in here. 

Hi puliboy, I’m about a week behind you have my scan 1st July: like you I’m finding the dry mouth a pain, I’ve found sugar free polos useful when I’m out I suppose any sweets will do. When I eat I just make sure I have a drink and can eat most things that way. I’m getting impatient the taste is still a bit wrong, haven’t enjoyed anything so far apart from champagne! That was the only thing I’ve found tasted good! Wasn’t on morphine so can’t comment on that; didn’t really have pain, was just sick as a dog whole way through! Like you trying to think positive and confident this has all worked, I do get wobbles though when panic sets in thinking what if it hasn’t but keep posting as you’ll prob have results before me so keeps me hopeful xx

Delilah. Treatment failure is really rare and complete cure if you are HPV positive in excess of 95%. 
The first year is crucial as that is when recurrence is most common which is why we are monitored so closely. 
Hold on to that and keep smiling now you’re through the worst. 

Delilah said:

I’m getting impatient the taste is still a bit wrong, haven’t enjoyed anything so far apart from champagne!

Hi Delilah,

Champagne? WOW!!

I haven't had any alcohol since my radiotherapy started in mid-June 2021 - and not missing it at all; yet.

I am almost 10 months finished RT and I am still having to rely on Ensure shakes for my nutrition. I can't manage very much 'solid' food yet. Tonight I had a small fresh haddock fillet that was lightly breaded and only managed about 2/3 of it before my mouth totally dried up and I was left with a lump of 'mush' in my mouth that I had to remove with my fingers - I couldn't even spit.

We are all different but I would guess that you still have a bit to go yet.

Onwards & Upwards,

Take Care,
Bob

I don't get dry mouth all the time - it comes and goes.  When it is there I find water works for me.  I normally try to drink one ltr of water each evening to get me through the night and I suspect the dry nights are when I've not drunk enough.  There is clearly a downside to that tactic in the middle of the night!!