My husband is seven months out of treatment for tonsil ca. and had some return of taste but now none. Has anyone permanently lost all taste. He is very depressed about this ...HELP

There was an article in the Washington Post Health section last week about people who had lost all sense of smell (and as a result, great reduction in sense of taste). A number of readers sent in letters which related their own experiences. Several people said they had been helped by taking zinc (this is based on several research studies) and another said she only got relief with acupuncture, but it worked within a few treatments.

The zinc studies say taking "excess of normal requirements" of Zn restored taste in a numer of post-radiation patients, as I recall Zn is necessary in production of an enzyme involved in taste.

There is a lot of info both on the OCF web site itself and in this forum on "taste" -- do a search on the latter and check the "side-effects" section on the web site main area.

The sense of smell is vital to "tasting" flavors -- otherwise we taste salty, sweet, bitter but not complex flavors. So I would also have him consult with an ENT to make sure he does not have some compromise of his sense of smell as well. Radiation could have damaged this, or he could have an unrelated issue affecting it (apparently long-term untreated sinus infections, for one, can do this).

Good luck,
Gail

I was warned that I could permanently lose my sense of taste by the RO when they explain all the risks to you before radiation (interestingly he never warned me I could possibly lose the ability to *swallow*, which is becoming a major issue for me right now) and so I was braced for the worst but so far it seems I have at least some taste sense left. Salty and savory(savory is a fifth taste sense that comes from the tongue, not the nose, and it is what makes meat taste good to us--most exemplified by how meat seems to taste better with MSG--which brings out the savory taste), in particular, seem to be functioning about normally. I haven't really done too many things that would be sour or bitter so I can't say about those yet--and I definitely am missing most of my sweet taste sense. As Gail mentioned, all the other complexities of what we experience as the flavor of things really come from odors and those are detected by smell--not your taste buds.

Hello Brenda

I have lost most of my taste which hasn't improved after more than 2 yrs. Most things taste bitter to me. Sometimes the first couple of mouthfuls are ok but then I lose the taste.

I am better with sweet tastes. Apparently the sweet taste buds are on the front of our tongues. I like sweet veg such as peas, sweet potatoes etc. My sense of smell hasn't altered at all.

This is one of the changes which I have had to accept. Not easy for a person who used to be a 'foodie'.

I hope this improves for your husband. Love from Helen

Helen did you have the IMRT radiation?

Hi Brenda,
Here is just one 'off the wall' thought. Does your husband brush his tongue as well as his teeth or use a tongue scrapper? Take a look at his tongue. It should be nice and pink. If it is white or some other color, he probably has thrush or just junk on his tongue that is blocking his taste buds. Biotene mouth wash might also help keep tongue clean. Thrush needs ot be treated.

As to losing taste due to not being able to smell, this has not happened to me. I am a total laryngectomee which means unless I 'waft the smells' up my nostrils, I cannot smell much of anything. Guess I got lucky and have super taste buds. Everyone's are different.

Take care,
Eileen

No Brenda, I had field radiation to both sides plus a blast to the throat. Very dry mouth now which doesn't help with taste and swallowing. Helen

I'm similar to Helen with treatment and op, done Xmas 2003. Taste was a real problem for a while (avocado tasted like grass) but not so bad now. Peppery, chilli type things, lemon are a bit of a killer, and I really miss bread, and certain types of carbohydrates.

The really interesting thing I find is my sense of smell. It so good, actually too good that many people are now disappointing...can smell bad breath a mile away, the cat's mouth is foul, even though my husband can't smell her, can smell people smoking in a car on a highway (!). I've got the best nose in the business to check if food is slightly off. But it can be annoying when you can smell all of these gorgeous foods you can't eat

Cheers!

Tizz

Brenda,

I hope your husband finds that his sense of taste eventually comes back. It can be a slow process, but I'm happy to say that my taste buds did get back to normal over time. I had conventional radiation (IMRT wasn't even around at the time).

Cathy

Brenda, while permanent loss of taste is a possibility, he should know that positive changes are possible for months and even years out. For instance, I was told that salivia would not get better after the first year or two. Well I still notice more and more and it has been 4 plus years.

I also agree that it could be worse with active case of thrush (dullness of taste is one of the first symptoms for me) and thrush is not always easily visable.

In addition, salivia IS important to the sense of taste. Replacing that lost moisture with something else is necessary for taste to be normal. I found that milk works very well and warm or room temp. works best.