Taste Buds Are Gone Answers Please

Radiation is different for everyone but USUALLY you will have a return of taste.  I was only radiated on one side (tonsil cancer) but I went through a cycle of food tasting weird, then bad, then like cardboard, then back to weird...at one point everything tasted sweet-even my water tasted like sugar water.  I first noticed the changes when cheese tasted awful.

The bottom line is to roll with it-find liquid nutrition to supplement your caloric intake.  It can sooth the mouth also.  My tongue and one side of my mouth was horribly ulcerated and it actually got much worse after radiation treatments ended and the cumulative effects continued on.  If it get so bad that you are not eating or drinking then ask your doctor for cetacaine-it is a spray the will numb your mouth for about an hour.  It can hurt right after application but it was nothing a few laps around the house didn't take care of! :-)

Find a brand of supplement like Boost or Ensure to make sure that you are getting the energy you need to heal.  I also went to the local GNC and got a protein powder that I mixed with milk, fruit and ice to make a delicious smoothie that was high in protein. Your need for protein is very high now if you are going through radiation.

It has been 3 months since the end of radiation...things taste better but I can't eat everything I want to.  Just when you think things can't get any worse you will begin to feel better-it happens quickly.  Then you will hit a plateau tha may last for up to a year.  I will celebrate with a big cheeseburger and some orange juice...both things I can't eat now.

Good luck-keep trying new things IN MODERATION and track your reactions.  I am now eating salads and I can dip chicken in ranch dressing.  You didn't mention whether you still have salivary glands-moisten all your food and eat small pieces slowly.  Enjoy what you can and dream about the things you can't-you will get there someday!

Taste Usually comes back, how long depends on how much of the oral cavity was treated.  If only a small amount of tongue was in the field it could start coming back as soon as a month.  When the oral cavity is treated it could be six month and on a rare occasion you may not get it back.  Some heavey smokers have no tast to begin with.

You need to go on the High Protein shake and supplement diet if you can swallow.  Keep yourself hydrated.  If  you can't force yourself then get a temporary percutaneous feeding tube.  This will keep your nutrition and hydration up and you will feel better and heal quicker.

On 6/30/2007 Kathy913 wrote:

Have sinus cancer on my 24th  treatment of radiation have 37.. ok my tatse buds are GONE  I cant taste a thing. also radiation has burned my tongue and it hurts.   I need to know when my taste buds will come back. because not eating  is starting to take its toll.... and i could go for a BIG T-BONE steak at the outback steak house.. so i need to know when to expect to make my reservations....

I had whole brain radiation in late 1997. I completely lost my sense of taste, smell, my salivary glands were damaged, eyesight, and even hearing were affected. My personal experience is that it took 3-4 years for these things to come back, but not even at 100%.  I developed cataracts and had thyroid damage, too. Today, 10 years later, I feel like things are back to normal but the cataract thing is permanent. Get your vision testing; hearing too. I would also suggest seeing an ear/nose/throat specialist because there could be issues that only a camera inserted through your nose or into your throat can diagnose. You can't see all the damage from the outside. Good luck.

My father had a non-malignant tumor of the brain and after two surgeries he had no sense of taste or smell.  Eating was very difficult but he learned he had to do it.  The biggest part of learning to eat things you cannot taste or smell is in learning to imagine what it SHOULD taste like then putting that imagination to work as you get through your meal.  When your tongue says it's cardboard you have to override that with, "Yum, this is great t-bone!".

He had one lasting after effect, every now and then he would be overcome, almost to the point of nausea, by either the smell of roses or fresh brewed coffee.  Both were imaginary and he had no control over when these sensations would hit him.  They're part of the "phantom syndrome" that many amputees go through.  It's an interesting phenomenon, to say the least.  I go through it being a mastectomy patient.

The best of luck to you and may you recover your tastebuds quickly.

On 6/30/2007 Kathy913 wrote:

Have sinus cancer on my 24th  treatment of radiation have 37.. ok my tatse buds are GONE  I cant taste a thing. also radiation has burned my tongue and it hurts.   I need to know when my taste buds will come back. because not eating  is starting to take its toll.... and i could go for a BIG T-BONE steak at the outback steak house.. so i need to know when to expect to make my reservations....

i had a tonsil cancer, stage 3. 37radiations/7 chemos. due to salivary damage i have trouble eating some of my favorite foods. when it comes to meat i have to eat meats with mucho fat. swallowing difficulty remains. nevertheless i eat or try to eat about anything. heavy fish like tuna or salmon are difficult to eat. i think it all goes back to the amount of salivation regardless of what they tell you. my taste buds remain a problem. some foods taste okay. some taste okay for a couple bites then taste like cardboard. the food i eat must have moisture in it. pasta is a winner. sausage/grease. what can i tell you? we are all different but you will manage.interestingly, beer tastes better than it ever has although i limit same to maybe one a day. good luck. by the way, after the last radiation treatment one continues to go down hill so to speak as the effects are cumulative. when it is over you will be a stronger person.  sam