After effects of Radiotherapy

Hello Mark,  I'm so sorry to hear what you've been through. The effects are brutal but they mostly do wear off. Nearly everyone gets a dry mouth, lack of taste, and burning/stinging with certain foods. For me anything acidic like citrus or tomato-based sauces was a no-no for several weeks after. I stuck to soft, moist, bland food at first.

Dry mouth is the most lasting effect I think. You can wash food down with water or tea, maybe carry a water bottle or spray and try sugar-free chewing gum. There are many products you can get for xerostomia (dry mouth) -  your team will know.  The main thing I found helpful, apart from water, was chewing gum (spearmint was better than strong peppermint) and Xylimelts at night. 

Before I started treatment my oncologist said his top 3 bits of advice were "fluids, fluids and fluids" to keep everything hydrated. I also did the salt & bicarb mouthwash several times a day which is supposed to stave off oral thrush & ulcers and I didn't get either. 

Good luck - In sure you'll be feeling better soon and it will all be worth it

Catriona

Hi Mark. Welcome to our little community. 
You’re not quite at the six week mark and it really is early days. 
What you describe is par for the course I’m afraid.  I’m nearly five years clear. I could eat most things by six months but it was a year before I was happy with my taste. Dry mouth does improve over time as the little salivary glands in the mouth and throat recover. The ones under your chin that provide most of the background saliva are shot forever. 
Recovery is a marathon not a sprint. 
Things that can help are xylimelts at night. Carrying around a small water spray to moisten your mouth is better than washing away what little saliva is there with sips of water. 
Chewing gum gets your saliva going and acupuncture helped me ( there are a couple of entries in my blog linked below) 

Prognosis is good. It’s never as it was but it’s still good. 

Hi Mark Has others have said it’s really early days although you might not think i5. I had 35 radiotherapy sessi9ns and. 2 chemo now 5.5 years post radio and my saliva in the daytime is almost as as good as  prior to treatment. Xyimelts at night stop my mouth drying out  at night.  It really is a marathon nit a sprint as general rule of thumb 6 months is a good indicator  of time scales.  When yiur mouth can cope with sugar free gum that helps to stimulate our saliva  glands Blog below might help.

Hazel 

Dear Catriona thank you so much for your response to my post. 

It was quite heartening to read the positive aspects of your experience. I clean my mouth and teeth three or four times a day and have always used a bicarbonate solution, however my dentist recommends that I change to a salt solution. Your recomme ndations regarding chewing gum is something I will get onto. I must look up xylimelts as that may help through the night..

I am at an early stage of recovery so have my fingers crossed for the future. I am scheduled for a PET scan late Feb early Mar. More fingers crossed that the primary doesn't show up.

My best wishes for your future good health. Take care MarkF.

Hi Mark

T2N1M0 tonsil cancer 30 radio+4 Chemo finished June 2023

Most of us posting on here have had to deal with the severe after effects of ChemoRadio...I spent 12 days in hospital trying to stabilize my weight, throat and mouth ulcerated unable to eat....PEG feeding tube required....taste now slowly returning, saliva glands working at about 25%...eating normally but require lots of liquid to swallow food...only things I cannot tolerate are med/hot curries ....mild Indian/Chinese are OK.....but things are definitely improving....takes time...treatment was tough.

Good Luck

Peter

Unknown said:

.treatment was tough.

Yes. Did anybody have the courage to look into their mouth and throat when they had finished? 

Hi Dani

Probably not ...Far too scared of seeing what kind of mess they were in.

Peter

I tried Dani but couldn’t see anything past my tongue ! I still can’t see my tonsils and I would really love to be able to get a glimpse , maybe it’s for the best . My tongue for some reason defo does not look the same after30 RT, I notice more redness and slightly odder shape ? Might all be in my head 

Brian the snail said:

I notice more redness and slightly odder shape ? Might all be in my head 

At the end of treatment my oncologist’s  registrar had a good look from outside and took a picture with her phone. A mass of white ulcers. 
subsequently my oncologist always gave me a good walk round the area when I was scoped. There’s a loss of papillae on my tongue which is quite smooth, a lot of the muscle at the back of my throat has been lost. I have masses of telangectasia which is even now still growing. It’s quite spectacular. My uvula has been radiated to a stump.

Oh and I appear to have no tonsils. 

Nevertheless function is perfectly good.  

Hi MarkF, I've had 3 Induction Chemos followed by 30 rads and 4/6 Chemos. You can see my progress in my profile if you scroll down to post Tr section. I'm now 6months out. Tina