Hello,

I was diagnosed with an SCC in my throat/tongue area in April. The only symptom was a secondary cancer which was a walnut-sized swelling of my right neck lymph node, though I had been having sore throats for years before this appeared. Although I had my tonsils out for a biopsy, the primary site was never identified.

Since then, I have had three sessions of "inductive chemotherapy" (cisplatin or carboplatin + 5FU, five days in hospital each) followed by 30 radiation treatments of 2.16 Gray with chemotherapy (carboplatin) every week.

Treatment finished three weeks ago. During the latter part of the treatment, things were pretty grim, but I am getting better every day now. However, I found about six weeks ago that I had not just "lost" my taste: rather, all food tasted disgusting and I couldn't (and still can't) eat anything. I had a feeding tube inserted, and have been surviving on diet drinks either orally or through the tube. I would love to hear some experiences of when taste returned for others, as I am getting rather depressed about ever regaining any taste.

Also, I currently have a constant salty taste in my mouth, which is very irksome---is this likely to disappear?

Stephen

Hi Stephen

Welcome to the club no one wants to join! I hope you find what you need here.

Congratulations on completing treatment. I've never had chemo, so I can't even imagine what it was like.

The best suggestion I can give, since you're having a hard time eating, is take liquid vitamins in addition to whatever you can eat, however you eat it. When I finally went back to solid food, I found that temperature and texture were more irksome than was taste. You might, at this point, want to avoid your absolute favorite foods--you could have a very hard time enjoying them in the future. I ate a lot of baby food and nutrition drinks after my feeding tube was removed.

Dr Joshi might be able to explain this constant salty taste.

You're not in this alone.

Julia

Hello Stephen

Well done for getting this far! I didn't have any chemo but I did still have the taste issues. I too had a salty taste in my mouth, and some food still tastes salty to me. I finished my treatment mid Feb and my taste slowly returned over the summer. I can taste most things now although some things don't taste as good as I remember them! The slowest to come back was my sweet tooth, which was a good thing really, but it's back now! I wouldn't say I'm totally back to normal, and as you will discover the healing process isn't on a constant gradiant, but a bit 'uppy downy', but I can eat most things now.
Poached egg was the first thing I ate and enjoyed about 2 weeks after my treatment finished, it was the most magnificent food I had ever tasted - I can still remember that feeling!
Good luck and keep us posted.
Best wishes
Vicky x

hi stephen

i think taste is something everyone has some problem with after chemo/radiotherapy. it also tends to be quite an individual process as to what taste returns and in what state. in my own case, taste took a while to return but i would say it is almost completely normal now. i still have problems with salty or spicy food (the slightest spice) but everything is quite manageable.

it'll take time but you will get there.

gordon

hi stephen
i too had an scc at the base of my tongue which was treated exactly the same as yours,this was almost 5 years ago,for me personaly everything tasted disgusting and it did put me off eating but i had a peg so i relied on that for supplements,nowadays i still have very limited tastebuds but i know what i can enjoy and i find myself relying less and less on the peg feeding,which is great for me.some people on here recover their tastebuds much quicker than i have so it proves we are all different in our recovery,if you fancy trying something then go for it,it may taste horrible now but a few weeks down the line it could be different,wishing all the best in your recovery shirl xx

oh yes i too remember the salty taste but it does get better, promise xx

Thanks for everyone's replies.

There seem to be huge variations in how taste recovers---for some, in months, for others, not after five years.

Since I first posted, things have got quite a lot better. The salty taste in my mouth is disappearing slowly, and I do have some taste for salty food, though none for sweet. I'm eating enough to have my RIG tube out next week, which will be a great landmark!

Thanks again for your support.

Stephen