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?
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.
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
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
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.
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?
Mine was the same cancer, it was also originally diagnosed as not cancerous, but fortunately for me one of the biopsies eventually turned up with a question mark and my surgeon went in to get the little sucker. Mine was not actually a lump but more of a spread out lesion so in the end the surgeon (fortunately for me) just took out a wedge of the parotid gland, some of it was still glowing when they scanned so I had quite a high dose of radiation.
My teeth are absolutely fine, no decay at all and my gums are tip top. My jaw is stiff but hasn't locked (despite the high radiation) as I do the exercises etc. every day. I can get my mouth open as wide today as I could before treatment, its just a case of sticking at it. As much as I can work out they want to remove 'problem teeth' in case your jaw locks and because if there is any decay and a tooth needs removing it may be that the radiation has left you with dead jaw (due to the radiation narrowing the blood vessels and starving the jaw of blood) and as a result it won't heal when the tooth is taken out.
Weighing up all the possibles and maybes I decided to keep my teeth and I am so glad I did. I only weight 7st 4lb (have done all my life) so I know I would have dropped weight rapidly without my teeth. Also I felt even if they took out the 'problem teeth' it might be one of the others that caused a problem and I'd still have the same problems.
I am doing just fine now, some saliva has come back on the left side (not much but some) and the parotid gland on the right side is now producing more to make up for it. I chew the sugar free gum when I go out (fruity flavour as the mint flavour seems to irritate the gums) and the more I chew the more saliva is made. I can taste all my food and eat just about anything I want now. So it seems to take forever, but month on month it does get better and better :-)
My heart goes out to you but I am sure things are going to get better for you. I also got the result of my PET scan today and an all clear, so the treatment does work :-)
