Radiation burned up taste buds

21dealerdave
21dealerdave Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
Is there anything that stimulates the taste buds on the tongue to get them working again?

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Jimmyd711
    Jimmyd711 Member Posts: 2
    #3
    21dealerdave,
    My tastebuds were toasted by radiation. Now that treatment is over, things have slowly gotten back to 'normal'. Whatever that is.
    How many radiations have you had? Are you still being treated?
    Hope this helps,
    Jimmyd
  • tracy_csn
    tracy_csn Member Posts: 15 Member
    #4
    My 39 radiation treatments completely eliminated all taste. It gradually improved over about six months. I could not eat without being able to taste, and so kept my feeding tube in for at least a couple of months after treatment ended. I did try Pilocarpine, a pill that for some stimulates the salivary glands. It did not help me and so after a month or so I stopped taking the pills. It has been about 18 months now since my radiation was finished, and I have all my taste back, and love to eat again.
  • digital_works
    digital_works Member Posts: 8
    #5
    Hi, I had NPC 10/1999. Forget about the taste buds for now. You need saliva 1st. I have osteonecrosis from the rads. I can not have any teeth pulled, since my jaw bone will not grow back, just like anyone else who's had rads on the face & neck. Last August, a endodontist who does only root canals, says I have some saliva, so try chewing gum, trident w/ xylitol. It is now April and I do feel more saliva in my dry mouth. Get a juicer and make your own fruit & veggie juices. Make milk shakes, w/o ice cream. 1 1/2 cup milk, 1 banana, 1 teaspoon peanut butter, brewers yeast, 1 teaspoon cocoa powder. experiment w/ milk shakes. osteonecrosis is the next step. brush w/ Colgate Total 2 times a day. good luck
  • Kevin priest
    Kevin priest Member Posts: 1
    #6
    Taste buds, OnStill no

    I have just finished 62 treatments for tonsil cancer, my mouth filled with dry foam for a couple of weeks, last week of radiation all I could get down was silk almond milk, no sleep, wake up choking on foam every 30 min. Five days out my mouth is filling up with saliva constantly,  kind of thick but not bad just tired of spitting. Still no taste, is there anything that will help them come back. Squamous cell carcinoma T16 positive stage 1-2 Right tonsil

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited February 2017 #7
    https://www.medicalresources

    https://www.medicalresources.com/shopping/proddisplay.asp?catalogid=14276

    I got mine in week 4  (of 7) of treatment.  I have not spit since then, I just stick in the wand and off it goes.  I am now in week 8 post, still use it a bit, but as the radiation burns heal mucus amount drops steeply.  

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #8
    My experience with sour is

    My experience with sour is passing.  When I started it was all salt, so all fruit tasted strongly like pickles. Now peaches in natural syrup are sort of neutral, sometimes mildly salty.  Milk is close to normal.  Bananas come through loud and clear.  I tried some spicy Indian sauce, which had no taste (to me), followed it with some nutritional shake and got overwhelming sweet.   The parts seem there, when they will work is iffy.  I'm 9 weeks post 35/7 treatments, and yeah I am having to fight to force myself to try new things. 

    My big discovery was milk.  Back during my weight losss/major struggle phase I thought what I was gagging on was milk.  Weeks later I now see that it wasn't the milk, it was the corn syrup. The nutrition shakes are all heavy with it, and it binds to things like crazy.

    I will say that on the good side things are much less stressed.  All signs point to good, a few on-going healing issues like tight throat muscles (if you don't have a speech/swallow therapist I would find one), mucus (in MUCH lower volume) so dealing with dry mouth and taste I feel I'll experiment at leasure.  Bad side is I am really beginning to believe full recovery will take a year.  I was hoping for much faster, but a year is starting to look realistic.

    I'm in Colorado, where recreational and medical Marijuana are legal.  Younger friends are all about me trying it, so I have a stash.  It's been 40 years since last use.  So far, no big deal, but I am on very low dosage edibles and tea.  Not sure what it is suppose to accomplish, increase appitite I guess, but functioning taste buds would do more.  Tea did NOT help with sleep, had no impact.  Reading for a couple of hours at bedtime did far more.

     

     

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    edited March 2017 #9
    Taste Buds are Duds.

    I am 3-4 months post 35/7 treatments. Food is still a huge mystery. I eat a few foods and that is it. My taste buds there but every thing still tastes terrible. Fruit and sweets are the most sour thing I have ever ate. Minimal saliva at this point. No chicken, hamburger meat, breads or dry foods. Just keep experimenting and some days you hit on a good combination and someday you get tired of trying. They tell me this too shall pass.  Good Luck and Fight the Fight.

  • wild willy
    wild willy Member Posts: 63 Member
    #10
    Kevin priest said:

    Taste buds, OnStill no

    I have just finished 62 treatments for tonsil cancer, my mouth filled with dry foam for a couple of weeks, last week of radiation all I could get down was silk almond milk, no sleep, wake up choking on foam every 30 min. Five days out my mouth is filling up with saliva constantly,  kind of thick but not bad just tired of spitting. Still no taste, is there anything that will help them come back. Squamous cell carcinoma T16 positive stage 1-2 Right tonsil

    taste

    i'm 6 yrs out and still have no taste. let me restate that. no taste except jelly beans. i know that makes no sence but thats the way it is. hope you get better.  Bill

  • wild willy
    wild willy Member Posts: 63 Member
    edited March 2017 #11
    Kevin priest said:

    Taste buds, OnStill no

    I have just finished 62 treatments for tonsil cancer, my mouth filled with dry foam for a couple of weeks, last week of radiation all I could get down was silk almond milk, no sleep, wake up choking on foam every 30 min. Five days out my mouth is filling up with saliva constantly,  kind of thick but not bad just tired of spitting. Still no taste, is there anything that will help them come back. Squamous cell carcinoma T16 positive stage 1-2 Right tonsil

    taste

    i'm 6 yrs out and still have no taste. let me restate that. no taste except jelly beans. i know that makes no sence but thats the way it is. hope you get better.  Bill

  • Poverbo
    Poverbo Member Posts: 1
    #12
    Everything tastes horrid

    I'm about 8 weeks post treatment 34/7. I got a g-tube in December and haven't had much solid food since then because everything taste horrid and to add insult to injury, any time I try to eat, my throat gets sore. I'm having some issues with dry mouth and some issues with too much mucous. I'm not sure which one is worse. I can't wait to get my sense of taste back.

  • nwfmike
    nwfmike Member Posts: 8
    edited March 2017 #13
    Sprint Car Dude said:

    Taste Buds are Duds.

    I am 3-4 months post 35/7 treatments. Food is still a huge mystery. I eat a few foods and that is it. My taste buds there but every thing still tastes terrible. Fruit and sweets are the most sour thing I have ever ate. Minimal saliva at this point. No chicken, hamburger meat, breads or dry foods. Just keep experimenting and some days you hit on a good combination and someday you get tired of trying. They tell me this too shall pass.  Good Luck and Fight the Fight.

    New normal

    Yup, it's not fun. I'm almost 5 years out I'm finally getting a bit of sweet taste back. Sour tastes are almost tolerable and I can enjoy red wine, but I'm not tasting it to it's full potential. When I cook, I have my partner taste it to let me know if I've got the balance right. She's been great. I used to eat really spicy food and now...even after trying to power through it for years, I just can't eat spicy. I'd put my saliva production at around 80% of normal.

    Anyway, here is what i did in hopes of stimulating my saliva glands and taste buds. I chewed gum. A lot. Like almost 8 hours a day while at work. It helped my jaw muscles come back and it helped my tongue become a more flexible. It also helped to generate saliva. I'd still be doing it, but I have some fairly aggressive bone tori in my mouth that seemed to be growing faster so cut out the gum chewing after about a year. I also drank red wine (used to love it). It was horrible...almost vinegary at first. My thought that the tannins would help the taste buds to rejuvenate. No idea if any of that worked. All I can say is my saliva came back and my taste came back to the point where I can halfway enjoy the taste of most foods.

    Good Luck.

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    edited March 2017 #14
    Different Results

    My radiation was less than yours so my taste buds came back within a year.  Everything is still sensitive though so I avoid any minty flavors as they burn.  My father in law had the maximum allowed rads back in the 80's because they said he took them so well.  His taste buds came back after 2 years.  The main complaint was him saying his beer tasted flat!  That man enjoyed his beer.

    So from reading all the responses, you can see that everyone has a different experience.  Hope for the best and they might just come back in time.  Sorry you're going through that.  My period was short and that was awful enough.

    What does your doctor say about it?

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #15
    I'm 3 weeks past my previous

    I'm 3 weeks past my previous post, 11 weeks post, and I get new tastes almost daily.  Fruits and vegetables are the sharpest, lesser are meats and breads, chicken is null.  Things were salty for weeks, now that is completely gone, and things that definitely had no taste a week ago have clear taste today.  A good trick is the salad bars at grocery stores, you can buy very small quantities.  I also hit lots of deli counters and mooch small amounts.  Once things come back they tend to stay.  Today's big discovery was Lime:  Very clear, very true, very Loud.  Yesterday it was Greek salad with different olives.  I'm at the end of week two of serious experimentation.  

  • hoopybunny
    hoopybunny Member Posts: 2
    edited April 2017 #16
    almost 2 years

    It's been almost 2 years since finishing 30 radiation treatments for tongue cancer. I had 2 involved lymph nodes that were totally encapsulated.  I can only taste the first bite of food so I revel in that first one! Strangely, I can sorta, almost, kinda, maybe taste plain Kefir. I was raised on buttermilk and I can get a taste of that. Luckily, I've never had a problem with eating as I get hungry so I eat to satisfy that. I went for 2 rounds of 15 treatments each of accupuncture for saliva and hopefully taste. It worked pretty good on the saliva....not on the taste. Sometimes I get down on not tasting anything but then when I count up the minutes spent eating versus the hours just enjoying non eating activities in a day....I'm just happy to be here.

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