My husband is now 20 days out of radiation and is worried his taste may never come back. Anyone know of a case where it didn't? I haven't heard of one yet.

I have heard of people whose taste didn't come back or was altered but they seem to be the exception. It took a full year for me and it happened gradually over time with salt being the first and sweets being the last. You have to be patient. I didn't even start to turn the corner for 30-45 days post Tx.

So, when did you get a first hint of the return?

Sorry, I replied to your reply before seeing the whole message. Joe had about 60cGy and no chemo. His tomur had previously been completely removed from parotid salivary gland. Do you think the amount of radiation makes any difference?

Hi,
For me my taste didn't start to return until about 60days or so post R/T.
& it's still improving all the time 9 months out!

I'm about 6 months out of radiation, and taste has not fully returned, but has gotten better.

I never did loose the salt taste, but sweet taste became very weak. The first bit of something would be sweet and then the taste would fade. It still does but has improved a good bit.

At first, anything sour would burn my tongue, even tomato sauce. I've been taking zinc supplements and I think they had helped my tongue to settle down and not burn. But the research on zinc seems very mixed.

I'm sure the degree of taste loss depends on how much radiation and exactly where on the tongue. My oncologist was very vague on what improvement I could expect.

Hello
4 years out and my taste has not returned although has improved - I have a very dry mouth also. My tongue still burns from 'strong' tastes even apple juice which I have to dilute (actually I prefer plain water). On the whole sweet is good although some sweet fruits taste bitter to me eg cherries.
Sending best wishes for your husbands recovery
Love and light from Helen

Ron,

It sounds as though you had the same doc as me. I tried to pin my radiation doc on loss of taste and when will recover but I could tell he didn't want to have to answer. The best I could ever get out of him was that "on average" it takes 2 to 10 months post Tx for the tastebuds to return. He still qualified this by saying that even in "some cases" full taste may never return for certain taste sensations. He stressed that every case was different and that there was no blanket answer to that question. I am now 14 months post Tx and taste is perhaps 75% back to normal. I still cannot tolerate the taste of chocolate or most other desserts and most bread products taste sweet. I was never much of a beer drinker but it is terrible now as it tastes like it is full of sugar.

Bill D.

Ron,
I am five years out, and after a couple of years I began to enjoy the taste of almost all of the foods that I have always liked. Soft drinks taste like syrup and candy is too chewy, but I can taste and enjoy steaks, Mexican food, pizza, desserts...really everything that is not too spicy. So even though I have the dry mouth, I really enjoy the taste of good food. Yesterday I went to one of my favorite funky hamburger and fries joints...a local favorite where even Bush Sr. and Lyle Lovett eat, and it was great.

So keep the faith...it really can get better. Once the taste returns, the desire to eat greatly increases and makes it worth the effort.

Take care,
Danny G.

I'm more than a year out from original treatment and sweets still don't taste good to me. Nothing tastes what I would call 'normal' still, but things like salty foods...meats, cheese, etc do taste decent. As you can see from the replies there is a wide range of recovery.
-steve J.

Helen,
Apple juice was one the FIRST things I could drink even when everything else burned my tongue. Shows just how different everyone is, unless they make it differently down under. I did take Zinc Sulphate after radiation recommended by dietician to help heal and improve taste.

Take care,
Eileen

Hi,

Not sure of the extent of his radiation, but it was 7 weeks after my treatment before I could eat. Taste comes back slowly. Sweets came first. I esp. like brown sugar on oatmeal. NO CARBONATED BEVERAGES for a while as they will burn.

Give it some time. I think it will slowly get back to normal.

Hi,
My experience is more or less like Helen with my taste getting better gradually but not 100% as how I felt before treatment. Now that I have reached my 6th anniversary, the mouth sore is still with me and I can never eat anything spicy or take any carbonated beverages. Not a big deal as I still have a lot of food for my choice.

Karen

Steve,

I had forgotten about brown sugar on oatmeal. I must have eaten a ton of it while in Tx and several times daily in the first few weeks post Tx. It was great and is still a fond memory.

Bill D.

I am 3 months out from treatment, taste started back at 2 weeks post tx, improving at two week intervals. I now have 85% of my taste back, if not more. I literally willed my taste back, smelling my food, then imagining that I actually tasted it even if I really couldn't. Call it 'taste training'.

Thanks to all of you who responded on taste loss. VERY best wishes to you, Steve J. Hang in there! Joe is forcing himself to eat, even if he can't taste it. Started working out a little and that seem to improve his spirit. We were lucky to have several cases of Boost left from his feeding tube days. That has been a litteral lifesaver. He didn't have the feeding tube for the cancer, but the day after his tumor surgery was hit with a neuro-muscular disease that, within 5 days, paralyzed him totally and put him in ICU, on vent and feed tube for 3 months, THEN, he could address the cancer issue. He's had a long haul, but looks like dalight soon, thank God!

Glad to hear youall are seeing some daylight! Way to go Joe! It would be neat if youwould expand your signature to let us know what has gone on with him so we could be better informed. Amy in the Ozarks

Welcome to the new normal.

Hi,

Just thought I'd give you all a good site with info on this topic.
http://www.meei.harvard.edu/patient/taste.php

Hope this is usefull to some of you.

Cheers,

Mike

I have no taste on the right side , but on the left side where they did the surgery , I have good taste. I also have the burning tongue from anything sweet. Everything else is fine. Have great day all. Jim

I am 7 1/2 -8 months out and don't have all my tatse back. things def taste different or not as STRONG as they did. At 1st I couldnt do carbonated and Now when I drink soda it all seems as though it is Flat . I dunno part of mine could be the neuroma or the Trimengenial Neuralgia that I have as I have regained (some) and then LOST(more) sensation. Who knows ..I guess as some else has said ... The "NEW NORMAL"

Shar

Mine came back about 8 weeks post treatment enough where I could eat real food again and have the PEG removed. I would say 6 months post RAD everything tasted about normal. I still can't do anything spicy, or with a lot of vinegar, and I have to drink my red wine after I eat or before, but not with food.