Having successfully undergone 30 Radiotherapy fractions between Oct and Nov 2020 - 5months on I am still really struggling with my eating. As much as the irritation has subsided immensely at the back of my mouth, although the slightest hint of heat has me sweating through my eyeballs, I am still really struggling with lack of taste and a constant dry mouth. I appreciate there is no real treatment for these side effects but wondered what experiences ppl have had following this form of treatment and how long this may go on foe - even though we all heal individually at different speeds. Everything thing needs to be full of sauce and moisture and there are still may things I can't eat - bread, meat, biscuits etc - as it is just too dry to chew and swallow - which has been great to help me loose some timber - the only good thing after surviving the treatment to come out of this situation. I have bought Life Kitchen by Ryan Riley which has been helpful but I am just reaching out to the community to share experience and look for advise. Thanks for any help
Hello Bodypump; I feel for you, it's a frustrating time. As you say we're all different but I can tell you a bit about how it was for me, I struggled for a long time post chemo and RT in 2014. Crumpets with Marmite were my staple diet for ages, but I got to about nine months in when I had an appointment with my consultant and things still weren't great, so I asked about it and he said that it was unlikely to get any better after than length of time, which was a bit depressing but I thought OK I can live with it. Weirdly from that moment on it got dramatically better very quickly, possibly it was a mental thing because I'd given up hoping it would get better, I don't know.
I never got back to the portion sizes I'd eaten before diagnosis but I could eat pretty much anything and get a degree of pleasure from it. I'm currently, after a second diagnosis last year, "learning" to eat again (my throat's been re-plumbed) after six months of tube feeding. Strangely my taste is now better than it's been at any time since 2013 and I can even eat a curry! I've also developed a sweet tooth (which I've never had in my life) and am eating loads of chocolate and cheesecake.
Really I'd advise not putting pressure on yourself to make things happen quickly, experiment with different foods and have a look at this website, it's quite new but I've found it really useful, good luck.
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 BP
welcome to the community.
There are ways to help stimulate surviving salivary function.
You could try sugar free chewing gum which helps a lot if people.
Acupuncture is another. If you check my blog out there are two sections on it.
You could ask about a drug called pilocarpine but there are significant side effects
If you have some saliva using xylimelts help stop you drying up at night.
As for food my taste was definitely on the back burner for a year but has improved. It’s really frustrating to find something unpleasant that you could eat the previous week. Bread and chicken is difficult for lots of people for a long time and meanwhile it’s just a question if adding moisture.
For lunch I’ve eaten a chunky ham sandwich with lettuce and tomato and a packet of crisps. It does largely come back.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Try this book - written by Ryan who lost his mum to cancer - the recipes are really easy
I was told that it would be as good as it’s going to get by 18months post treatment so we’ve got plenty of time for improvement yet.
Improvements continue well after that so don’t despair.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
