Hello everyone. It is now 5 months since I completed Radiotherapy for tonsil cancer and my sense of taste is coming back and I enjoy the initial mouthful.However,because I lack sufficient saliva the food becomes a tasteless ball
I am adding lots of salt and sugar and frying things to help create some taste.Normally these would be considered unhealthy.
Have my saliva glands been destroyed?
Does anyone have advice?
Thank you
Alfredo
Hi Alfredo. The answer is unlikely.
Most radiotherapy spares at least one parotid gland ( under your ears) your submandibular ones are probably permanently done in. You also have lots of tiny glands dotted about your mouth and these seem to be more resistant to RT damage. Your mouth has had a huge shock and takes time to recover.
Try stimulating your glands with sugar free gum. You might be pleasantly surprised.
I had Auricular acupuncture which helped kick start mine. There are a couple of entries about that in my blog.
Tasting the first mouthful only is dead common but it does get better. It was a year before I could confidently taste my food anywhere near properly. Improvements still continue to this day.
Don’t despair. You’ll get there.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Hi I can only echo what Dani has said I am over 4 years post treatment for tonsil cancer with several affected lymph nodes.I am still getting small improvements even now. Todays my hubby birthday and I’ve eaten a full 3 course meal which back in the early days I would have never thought possible. I’ve also completed a 8mike hill walk today and no longer have ti constantly drink water to enable me to do it. I’ve drunk no more than I would have prior to treatment. My mouth now most of day feels like it did pre treatment. I honestly thought it never would. So jut give it time it’s early days for you. We are all different and hopefully you won’t be as long as I have been. I also had auricular acupuncture and chew sugar free gum
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
I am adding lots of salt and sugar and frying things to help create some taste.Normally these would be considered unhealthy.
Try herbs and spices instead. You can make a spicy curry that has no heat using spices like coriander cumin garlic and adding coconut milk and lots of vegetables. You can slow cook meat, especially lamb with extra gravy to help it down. Sweet potatoes are better than ordinary spuds. Try taking the tiniest sip of warm water or tea with each mouthful to act as a sort of proxy saliva to help you chew.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
According to my surgeon, when I was discussing the (dis)benefits of surgery, "radiotherapy damages nerves, saliva etc, but it tends to recover. Surgery, on the other hand, tends to be a one-way journey and what is cut remains cut". It may take time and stimulation for it to recover but hopefully it will.
Hi try substitutes for sugar natural honey from a local beekeeper if possible or pure vanilla extract .Remember we need to take extra care with our teeth so brush 30 minutes after eating especially sweet thjngs gs. Use duraphat toothpaste and get yiur dentist ti do a fluoride varnish in your teeth every 3 months. I’m one of the unlucky ones I can’t tolerate any spices such as chilli but do a mean aromatic curry using cumin coriander,cinnamon bark and coconut milk . cinnamon is also useful in sweet thjngs to add taste.
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
Hello Hazel
Thank you for replying to my questions and relating your experience
I will look into the acupuncture treatment in due course
At the moment I have lots of hospital appointments for things like Dentistry and other side effects of the Radiotherapy
Congratulations on your achievements since your treatment
Best wishes
Alfredo
Hello Dani
Thank you for your tips on ingredients
I have a 70s make slow cooker and will definitely try the lamb casserole which is something I used to Cook before my treatment
Best wishes Alfredo
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007