Taste Changes

Hi

All of us are different. I have a background sour taste seven years on but I can taste everything and even tolerate a mild curry. Hazel I know didn't lose any taste at all. I think you might have to wait six months  till after treatment but for most of us things return to almost normality

Finished treatment then 6 months to a year before my taste and appetite were to my liking, I challenged myself with different foods and drink, sometimes it worked other times not so good... Nearly 3 years since I finished CRT and I can eat and enjoy most things... Vindaloo is still a no-go... some meat products are still off the menu... but I'm quite happy with the new normal...

Guinness alcohol free was one of my first treats...and I could taste it.

Hi gp. You are still having treatment so sadly changes in taste, things tasting awful is par for the course. In week 4 of my radiotherapy that is what happened to me and to most people. It takes a while for the taste to return and for some there are ongoing changes but it definitely improves given time. It is a stage you have to get through. Food at that time is for fuel not for enjoyment unfortunately. I have some changes still but on the whole food is quite acceptable again for me. For many their taste returns completely. I have found options that work well for me in spite of my taste changes and I do still enjoy my food. As Dani says you may have to give it 6 months after treatment but it may improve sooner. Everyone is different. Hang in there this is only temporary.

Lyn

Hi Dani,

Thanks for taking the time to reply. I’m glad there may be (some) light at the end of the tunnel. I know it is early days for me still but with 2 surgeries stopping me eating and 4 wisdom teeth removed before RT it feels like the only joy I have is being stripped! 

I am curious to know what it is that stops you eating spicy food - is it pain, irritation etc? 

Thanks again,

Jack

Hi Michael,

Thanks for responding to me. Funnily enough after reading some replies I went to Sainsbury’s to buy lots of different things to see if something tasted ok.. Wotsits seemed to be ok…

Again, curious to know what it is that stops you eating spicy food and certain meats… do they just taste like rubbish?

Cheers,

Jack 

Thanks Lyn. I know I’m super early days and after reading your profile I know I’m very lucky in the grand scheme of things - you just don’t realise how many things revolve around food do you! I think hearing some stories that have a somewhat happy ending (as far as taste is concerned) is reassuring.

I hope you are doing well!

Jack

I just couldn't tolerate curries for a while, tried hard to mouth them but it was quite painful, I persevered, started with Korma then Chasni .. graduated to Balti and Bhuna, can now enjoy a Madras and Chili con carne... chicken and beef are OK as long as they are in a sauce, steaks and burgers are still hard work... savoury minced beef is very enjoyable.... some cheeses are fine, some have no taste... cheese and tomato on toast is pleasant.... still a bit of trial and error three years after finishing CRT 

gp1909 said:

I am curious to know what it is that stops you eating spicy food - is it pain, irritation etc? 

Pain....just too hot on the throat

Hi - we seem to go one of 2 ways in treatment with our taste.  Bitter/sour or salt.  I went down the salt taste route and had quite some difficulty especially when drinking water tasted like a moth full of sea water.  Through experimentation I eventually found one brand of sparkling water that worked (and still does) for me.  Like many of us I still have a bad taste in my mouth- in my case it is like a mouth after a very hard night's drinking session.  We are all different in the way we respond to the treatment.  I do love my food, but I do have to be careful what I eat now.  Generally it is swallow that is my problem rather than taste.  Normally I know what I am eating from a very much muted taste from what I remember.  Also smell becomes a much more important factor in taste for me. What I can eat one week I cannot the next - that is the nature of our lives after treatment.  Alas I do know that chilli is a no go for me as it really hurts my throat and makes swallow almost impossible.

Having said all that I do live a good life and eat out quite often - one of my sons is an excellent chef and runs a number of gastro pubs.  Hopefully you will also find that happy medium in due course.  Just remember it takes time and a determination to experiment and not be scared of failure as you find your new life post treatment.

Hi,

Is it the parotid gland or the smaller glands?

I underwent 33 fractors after a total parotidectomy and neck dissection (levels 1 -5). My taste returned around the 3rd week after finishing radio and I would say that my taste is the same as before treatment. I remember reading another persons update and they were the same. I know that my treatment plan targeted the parotid region maybe this infleuenced how fast my taste returned.

During treatment I could only stand stuff like mac cheese, chicken soup, triffle (pudding for breakfast lol) and custard. Have they provided you with shakes? 

Also, you are not been dramatic at all it is crap! 

Best wishes