I finished my radiation and chemo treatments for tonsil cancer last September and I am doing really well except I can't taste anything. I always thought that the taste buds would come back but I went to my ENT doctor today for a check up and he said he couldn't tell me when or if I'd get my taste back. He said most people at the point I'm at have their taste back and it's a possibility that it won't come back. I'm wondering how long it took others who have had radiation to get their taste back.

Hi Rainey,

Have you not gotten any of your taste back? I had radiation to my mouth from late August to late October. I was wondering when mine would come back. I think it came back gradually. I think I can say now that most everything tastes normal again. There might be some things that don't taste just right yet. Sometimes things taste blah even though I've gotten most of my taste back. I know it is disheartening to have to go day after day and not be able to enjoy food. My doctors said it would return in about 8 weeks. Well, it was much longer than that. I knew, too, there was a possibility that it may never be the same, if at all. I hope and trust that your taste buds will eventually recover.

Cathy

I've been wondering the same thing. I'm just a month away from my last rt (5/24). The radiation oncologist thinks taste should start comeing back soon, but my ENT said maybe not for a year! I think it's a function of the amount of radiation received. IIRC, I received 54 gys IMRT.

In the meantime, I'm still living on Ensure and Nutren and some weight gain stuff I got at the health food store (it has lots of essential amino acids). I'm barely keeping my weight up, but don't have a lot of energy (and probably won't until I get back on a regular diet).

Riley

I had the maximum amount of radiation and my taste buds started returning to normal within a few months. Sslt was the first and sweets were last - It took over a year before I could enjoy sweets again. Some people, unfortunately, never get their taste buds back or at least where they were pre Tx. The IMRT helped a lot. it also took over 1 1/2 years for the salivary glands to make a full recovery.

I also received radiation and chemo to treat my tonsil cancer. I lost my sweet taste bud during my treatment and even now, I cannot tell how sweet the food is. I won't expect any improvement since the situation has been like that for nearly 5 years. As for the other taste buds like salty, bitter and sour, I have never missed them and they are quite normal to me. If you have IMRT, the situation should be better, as what Gary said.
Be patient.
Karen

Hi Rainey,

I think we all wonder when anything will work again. My taste started back about 2 months after last treatment. I am now at 5 months and there are a few things that do not taste right. I can taste salt and some sweets, but there is still a Blah area in there.

One thought I had was some Medications can also distort taste. So you might want to look at that as well. Maybe your buds need a little more time.

take care
Diane

Have you checked what your tongue looks like? Is it nice and pink or does it have a coating of 'glop' on it? If you cannot seen taste buds, I suggest starting to brush your tongue every time you brush your teeth and getting a tongue scrapper from you dentist. If your taste buds are buried under all this 'gunk', you will not be able to taste. You also need to be checked for Thrush. This kills taste also. Just a suggestion that may help.

Take care,
Eileen

My radiation badge was maxxed too. My sense of taste never really came back. I get "hints" of flavors, but nothing consistant and nothing I can really recognize. Also my sense of smell is gone. I'm 2.5 years out of tx, feeling great, doing well in most other ways, just no taste, smell or swallow. Peg tubes R Us. We are each so different in how the ray gun left us - but we share being 'beast-free'!! TJ

Thank you all for your responses. Gary, I thought the salivary glands are gone for good. It's good to hear yours came back! RileyMC: It will take a while to get your strength back. A fellow survivor told me about Campbell's Soup At Hand Velvety Potato Soup when I was where you are now. She said it was the only food she could eat for a while and it worked for me too. I still keep it around for snacks. It is in a styrofoam like container and it microwaves in a minute and a half. Tom J: I do comfort myself when I focus on the fact that the treatments that took my taste and saliva glands are the treatments that killed the cancer and so I appreciate them I don't resent them.

Friends,
I had lots of regular radiation and lost my sense of taste, but now, 4 years out, I have regained most of it. Cokes still taste like syrup so I don't drink them anymore but I absolutely love the taste of milk shakes and sweet cream ice cream with oreos crushed in it and any good puddings or mousses. Also steaks, burgers, fries, seafood, pizzas, etc. taste as good as they did in the old days. The only thing that I avoid are spicy foods.

It can get better.

Danny G.

I was brushing my tongue regularly and it was desensitizing my taste buds. My taste improved a lot when I stopped that practice. All of us respond differently. I like hot spicey foods and have no problems with salsa or peppers. I was pounding down the Cokes too but quit that when the hygenist warned me about increasing the frequency of my cleanings. At 3 1/2 years, my sweet tooth has returned and I love ice cream, sundaes, chocolate, etc. It seemed like it took a long time to get it back together. My salivary function is good enough that I can spit and lick envelopes. The Parotid near the tonsil was wiped out though (because it was directly in the radiation field) but you have 5 salivary glands.