I'm one year post treatment (radiation only) for tonsil SCC.

Of course in the beginning food tasted bad, but it got better, a lot better.

Then maybe 6 months ago it got worse, but not bad.

Then it got better, pretty much back to normal.

Now it's getting bad again, noticeably bad, worse than before. Now basically nothing tastes good anymore, even the things that were tasting pretty good.

I know recovery is a roller coaster, but it seems the hills and valleys are getting bigger, not smaller.

No other symptoms, and all the head/neck/chest CT's keep coming back all clear.

Of course it makes me worry (but only a little).

Thoughts, opinions, anyone...before I request an appointment with my ENT...thanks

Tony

Sorry to hear this Tony. And 9 months post rads, I'll follow your progress with interest. Have you lost saliva? Any change in the swelling in your neck? Have you had a cold or virus recently? A year post rads you must be close to a follow up scope I imagine? What foods are you able/unable to eat? Are you holding weight?

Sorry if that sounds like 20 questions, just looking to flesh out the conversation. Hope it normalises for you soon.

Hey Tony! Glad to hear that your scans keep coming back clear. I hear you about the roller coaster taste buds. I know when I'm dehydrated my taste is off, when I taking antibiotics, and when my creatinine levels (kidney) go up, besides taste being numbed from hot food, so I eat mine warm. A sinus infection, other infections can too like OzMojo mentioned, and thought I read your need to clear yours often? Thrush? Zinc helps some with taste, but I never used it for that reason. Maybe try different foods, go to a buffet. As you can see its hard to say, taste, smells are complicated.

You can never go wrong with seeing an ENT for any reason, even if it's just to hi Good luck.

Oz - to answer your questions.

No problem with saliva or dry mouth. I think all salivary function returned to normal.

The sinuses still get a little dry, but a saline sinus wash a couple of times per day fix that wonderfully.

There aren't any foods I can't eat; hot, cold, spicy, savory, sweet; I can eat them all. It's just that many of them don't taste very good.

Weight stays constant, neither gaining nor losing. I accomplish that by avoiding lunch most days and then reasonable serving sizes for the other two meals per day.

I guess it is what it is

T

Interesting. The taste recovery for me has been fairly linear, and I'd say 80-90% back to the old normal. I struggle with very dry things, like roast breast chicken, I can't tolerate anything spicy, and I have no interest in anything sweet. Not sure why, I've just gone off sweet things like chocolate. Weight is steady.

As Paul suggests hit the buffet and try a range of things. Hope you find something you like.

It sounds strange because we expect the sense of taste to return gradually. I met a guy at my support group who regained his taste two years after radiation quite suddenly but says he has very little appetite. I think he had tonsil cancer and it seems that tonsil people have radiation where it hurts the most.

This used to puzzle me because the tonsil - in my childhood - was a completely dispensable part of the body and one that doctors frequently removed in the 1950s and from very young children.

I've tried to do some research into taste bud recovery but haven't found a site which presents the information in a manner I can understand.

My own taste started to return 10 days after radiation ended and is now almost 100%. Savoury foods are often too salty and sweet things taste better, alas. I can even differentiate the different fruits in a smoothie.

Regarding the return of taste.... As my husband lost taste, things began to taste "vile" to him - even water! So.... as the taste buds come back (he's got 7 more rads to go!), does one go thru the "vile" period before things taste normal again?

Just curious, as I am trying to figure out what eating is going to look like once he can. Thanks, y'all!

Sorry Tony, not trying to hijack your thread!

MrsChickenPam, most patients will experience everything tasting terrible for a few weeks after finishing rads. Some will have issues relearning how to eat properly again, plus having a lack of appetite makes it difficult. Recovery is full of ups and downs and is a long, looonnnggggg road. One day something will taste great and the next day (or sometimes after only a couple bites) it will be horrible again. Most patients will begin to get their sense of taste back around 6 weeks post rads. A full recovery can take up to 2 years after rads. It cant be rushed, and for many patients recovery is a frustrating time.

MrsChickenPam - I've had several bouts with the vile tasting food phase. The worst phase was during treatment, others were not nearly as bad.

I drink my coffee black, but I swear it tastes slightly sweet about half the time.

Milk sometimes tastes about half bad, but that doesn't stop me from drinking it (or using it on my cereal).

Steak tastes great, chicken usually tastes bad unless I have some gravy or sauce with it.

Beer tastes great though it didn't before.

Food taste comes and goes, here today, gone tomorrow. I thought it would all just slowly get better until back to normal. Sorry, it doesn't work that way.

... Still enjoying being on this side of the grass.

Hi Tony , I'm with you on the taste issues still having very altered taste myself.
Strange what you say about coffee sometimes tasting sweet the very same thing happened to me I was adamant Mike had put sugar in mine by mistake . Chicken beef steak not much taste , gammon bacon salty meats much more palatable . Veggies taste pretty good specially mushrooms , sweetcorn, courgettes . Milk and eggs okay for me . Sweet stuff still craved but very disappointing . Also like I've read on here before often the first mouthful is better than subsequent ones .
Take care Di

Oz, Paul, and others make really good points. Hydration is important, every day is a crap shoot as things change around and aren't consistent after treatment for a long, long time! It's critical to rest well, stay hydrated, savor the first few bites, as saliva loss occurs taste flattens out, and keep trying new things and pushing yourself. Even prior to my last bout starting a few months ago tastes changed around a lot even after eight years, but I was grateful to eat and as Tony says above, "Still enjoying being on this side of the grass." Best to all.

Remember that there are different taste buds for different flavors, and they are NOT spread evenly throughout the mouth. My husband's experience was that tastes came back at different times. He says that many foods still don't taste 'right'. About a year ago we started experimenting with south indian cooking that emphasizes layers of flavor and infuses the cooking oil with the spiced. In addition, since we didn't do that type of cooking, there was no 'right'. We have found that concentrating on the umami flavors for be helpful.
Maria