I have a dry mouth issue, using Pur gum & xylimelts with some improvements. When I get dry, tongue & cheek stick to everything, really causes irritation & inflammation. Anyone experienced this? Not sure I can do much?
Hi Steve. Yes in answer to your question dry mouth is very very common. Even now 3 years post radiotherapy for tonsil cancer I still use 1/2 an xyimelts every night. Are you drinking enough water ? In early days I was drinking uo ti 3 litres of water a day. When eating I drunk luke warm tea with food.
I also had acupuncture which I am sure it kick started my saliva glands. You need to look for an auricular acupuncturist.
don’t despair it does keep improving just takes time.
I also still take water to bed with me now I don’t always wake to drink it but it’s there.
I am still noticing improvement s at 3 years it a long slow progress but we’re all get there.
hope this helps
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
As Hazel said Steve it's very much par for the course but there are thinhgs that can help as she has mentioned. I had acupuncture as well though unlike Hazel mine wasn't auricular, it was in my fingers, can't say for sure it worked because obviously don't know how I'd have been without it but worth a try.
I'm now about seven and a half years post RT and have to say my saliva is back to where it was pre-treatment, not much help to you now but there is light at the end of the tunnel, even if it's quite a long tunnel.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Hi Steve, we all experience this after treatment, it does get better but doesnt completely go (well it hasnt for me yet but i guess i am still early days)
Things that worked for me
Saliva spray when things were really at their worst....xylimelts etc didnt much help until i was producing at least some of my own saliva. But i used a tonne of saliva spray...boots expert dry mouth spray was a decent and cheap option, i got on really well with glandosane as well.
I also found constant sips of water helped me
Once i was producing a bit more saliva, i found gum and xylimelts a big help.
Others have had a lot of joy with humidifiers as well
Trev
Hi Hazel HPV tonsil cancer, day 4 treatment at Christie. Read your blog from start to finish. Totally scare and inspired in equal measure.
It affects us all as far as I can see Steve. I’m 7 months post treatment and although it’s improved a lot I still have issues producing enough saliva to eat some things. I’m just back from a week in Cornwall and the obligatory pasties, although delicious, only went down comfortably with mouthfuls of water (or beer) on hand. I find that chewing Extra chewing gum, which you can buy in tubs, is a great help. It also helps keep your teeth clean which is an added bonus, as this is something of a danger area after RT to the throat.
Beer is always a handy thing to have on hand Mark . However, I have to say, as a Devon resident since 1998, any holiday in Cornwall is a missed Devon opportunity, why drive through? Those Celts over the Tamar are strange folk.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Slow cooker is a godsend with meat in my experience, makes it so much easier to digest.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Ha ha Mike! We actually stay in Bude each which is right on the border with Devon. And yes, they are strange folk. I did the Tamar Lakes Parkrun on Saturday which straddles both counties. The rivalry between the Devonians and Cornish was surprisingly intense!
Hey Trev. Long time….
Meat isn’t too bad. It’s pastry and bread I find the hardest to swallow without a drink. That said, I do have to chew meat much more than used to and have to kind of line it up on my tongue before swallowing it. I agree with Mike though that slow-cooked meat is a godsend.
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