Tastebuds, appetite and tube

yuggyp said:

I’m sure this has been covered many times, just wondering how others are coping, have coped

Hi yuggyp 

This is all par for the course. I didn’t lose taste but got painful ulcers and couldn’t swallow. I just used my tube and got on with it The treatment was killing the cancer and I knew it wouldn’t last forever. Yours won’t either 

when you start using the tube start your swallow exercises 

Hi yuggyp week 3 of RT is usually about when things eating wise do get difficult. Eat as much as you can, but maybe have a chat to the dietician about going on over night feeds through your feeding tube. I was 100% reliant on mine from week 3.

Ray. 

Hi yuggyp,

Is Olivia your dietician ? She is really good.Give her a phone.I couldn't eat by week 3 and used peg with the Nutricia liquid in the evenings and overnight and didn't lose any weight.

Turi

She sure is, I’ll do that, thank you

I think most lose the ability to eat around week 3.  I made it further by supplementing what I could eat with lots of Fortisips.  In the end I too had to resort to pump feeding .  I was lucky as I did not lose taste until the week after treatment finished and got it back around 6 weeks later.

Calories are vital and 2 Fortisps are probably not enough.  I would advise to not fight the need for tube feeding.  Get issued with a pump and the bulk feeds.  I did not like to feed overnight, but I had a backpack so carried the pump and feed with me when I went out so was not limited by daytime feeding.

If possible keep up your swallow by taking water or Fortisips orally, it will pay dividends in the long run.  I know that is difficult with lack of taste and pain from ulcers, but it helped me get back on track quicker.  I found that tap water tasted of salt so resorted to sparkling mineral water - and then only one brand tasted acceptable.  The bubbles had the effect of helping to clear mucus as well.

Hi Yuggy

Finished chemoradio in June last year....PEG tube out in September.... started on full solid meals around the same time..... food was mostly tasteless no appetite.... eating to survive....then things started to improve ... taste slowly returning.... still improving.....now eating and enjoying chippy food and curries....mild ones... things will improve...

Hang in there.

Peter