Tongue still sore after 10 weeks post RT

Yes me Sue. The ulcers along my tongue persisted for weeks. I was eating by 12 weeks despite them though  

Par for the course for most, finished chemoradio June 2023... Late August/early September before I started on small meals ... tongue still painful at the start of eating.... plenty of Difflam being used 

Peter 

So frustrating isn’t it Dani, I don’t have ulcers but my tongue is still swollen and sore. Did you eat normally after 12 weeks or still soft food? Sue x

Thanks Peter, how long did you need pain relief as I’m still on morphine patches and I take ibuprofen most days. Sue 

About 12 weeks, then I was fit enough for an inguinal hernia op, intubation damage to my throat meant another 4 weeks of pain, Difflam and co-codamol controlled any pain after, 17 months post treatment and I still get the odd niggle.... nothing drastic.

Peter 

I managed a very rare steak. It didn’t taste of anything though 

I was still on morphine at that time too. 

Sue, alas this is par for the course.  At nearly 10 months I still get the occasional flare up on my tongue, nothing disasterous it just lets me know it is there!  It did take a long time before it settled down sufficiently to feel comfortable with eating.  I found that quantity of food caused it to complain so, even to this day, if I feel I am getting into difficulty I stop eating for a couple of hours and then come back to my food.  The microwave is invaluable.

Hi yes  I had ulcers full length of my tongue and burning cheeks but I persisted with soft foods from week 3 there was no pleasure  in food for a good 6 months. I was opposite to most I never lost taste buds but had over exaggerated  taste buds. Even now i can  taste things in food that others can’t  im 6 years post ive  learned to live with it, i am so sensitive i can  tell if a supermarket changes something in recipe. I took to attitude food is fuel. Its not easy but for the first year I didn’t eat anything that a baby or toddler couldn’t eat  I thought nursery food rather than fine dining plus I had 6 small plates of food a day to start with food can over face us  

Know it might not be what you're wanting to hear p, we are affected differently in my case  I can’t eat spicy or currys or any alcohol apart from the odd beer. Treatments brutal as we know but its worth  it I’m living a fab life  there’s no ine size fits all my husband is still amazed I can eat cheese and crackers but  I cant  eat rice in any shape or form it sticks to my throat .

Hugs Hazel 

Thanks hazel, it seems I’m following in your path as I still have taste but unfortunately my favourite taste of garlic I can’t stand at the moment but hope it returns to normal soon. Also my favourite wine is a no go area or any alcohol for that matter but hopefully will return once my tongue is not so sore.

These replies really help my recovery and stop me feeling sorry for myself thinking I’m the only one suffering!

Thanks again, Sue x

5 months post treatment for me and I still have a sore "patch" on my tongue so it's not too unusual. Fortunately no longer needing pain relief but it's still limiting some of the stuff that I can eat.

Have found in the last 2-3 weeks it has got considerably better and been able to broaden out a bit (even managing an eat out curry a couple of weeks ago which was perhaps the best - and most emotional - meal I've ever had).

Ironically enough I can't stand the thought of soup and custard now as they just remind me of being ill as that was pretty much I was able to eat for so long.

As Hazel said everybody responds differently, but take some comfort from the fact that it genuinely does get better over time.

Best wishes