Taste and saliva

Hello, I know there have been posts on this already but I wanted to start a new thread.

So my story, I am 23 years old and have head and neck cancer. I have to do 35 rounds of radiation, which I am on number 19 and 9 weekly doses of chemo, on 6 I believe and then 3 more monthly doses of chemo. Shortly after starting radiation I lost all sense of taste to the point where I have given up eating and just do tube feeding because as soon as I get food in my mouth my stomach starts to turn and lack of saliva makes it hard to swallow any way.

my concern/question is how long till my sense of taste comes back and if it does not come back, god forbid, is there any medical procedures that can give u taste? I am very worried about not bein able to taste, I love food and one of my favorite weekend things is trying new restaurants. I had a fsirly bland sense of taste to begin with due to I have no sense of smell but never being able to taste food again the tought is unimaginable. And since its the main reason I haven't ate I fear what I will so in the future. I weighed 140lbs going into this and already lost 20 I can't afford to lose anymore and I am not sure how I will be able to eat again if I can't get my taste back. There has to be a way pls help!!

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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome...

    I had similar treatment, similar results with saliva and taste..., no PEG though.

    Everyone is different and recovers differently.

    Even though on the PEG, you need to make sure to use your throat muscles though... You could lost the ability to swallow if you don't. That would totally stink for when you are NED, but can't eat again... So don't go there.

    I can't think of anyone on here in my forur years post TX that hasn't gotten their taste and saliva back eventually. Most get it back within the 85 - 100% range, a few are still struggling for that.

    It might start back within a few months, to taking nearly two plus years to get to where I was at that time...100% taste back, and around 95% or so of saliva.

    Hang in there, it'll get much better....

    and I love food as well...

    Best ~ John

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hi there and welcome to the forum....

    You're going to have to heal after treatment....so patience will be your friend.  Losing your taste and your saliva is perfectly normal, and I can tell you were aware that this was going to happen.  Getting it back after treatment will take a while.  The three chemo's you will have after rads are over, will also play havoc with your taste buds, but between treatments, like in the third week, you'll notice a little taste coming back.  Everybody seems to suffer from taste fatigue after treatments are over....that is....that the first bite is wonderful, and all taste is gone by the third bite.  That too improves...SLOWLY.  I know it's easy at 23 to think in absolutes "always", "forever"....but chances are that won't be the case...tho, everybody is different.....some have gotten a lot of taste back within months of treatment....some of us, it's going to take a while....I'm going on 7 months from the last radiation (5 months from the last chemo)....and taste is still pretty dull...saliva is at about 20%.....I'm just saying keep the absolutes out of your head....and be patient....

    As for just using your tube because of the lack of taste...no no no no no......You MUST swallow something every day, even if it's just one can of Ensure, or water.....something.  Lack of taste and saliva is nothing compared to what you'll have to go thru to get your swallow-er back.  It'd be a waste to get your buds and your "wet" back if you can't swallow anything.  You also need all the nutrition you can get....eating for pleasure is now on the back burner.....you're now eating to live....so take in as much as you can every single day....it doesn't matter what it tastes like.

    You're going to do ok....you're young and strong....and the odds are that your taste and saliva will be back....

    p

  • corleone
    corleone Member Posts: 312 Member
    Taste will come back slowly, saliva even slower

    Sorry you had to join this club, but you are in good hands here. Everybody’s experience is different. Here’s mine, in a nutshell (for treatments I followed, please see my profile): I am 4.5 months post rad and 1.5 month post last chemo, and I doing quite well! Taste almost back (except for sour), saliva not yet (~10%). I am eating “normal” and I got rid of the G tube a few days ago. So the idea is that the taste will get back very slowly, but it will. In my case the first to reappear was the one for salt (after 1 month post radiation). 2 months post radiation the one for sweet came back, followed, after another month, by that for bitter. The saliva hasn’t returned yet though, but I can eat almost anything, including bread and meat (if I use plenty of water or tea). You’ll have taste “fatigue” meaning that even when the taste comes back, the first few months you’ll feel it only for the first 2-3 bites, than fades away quickly. Later on, the taste is more persistent. Very important: keep swallowing, even if it’s only water or tea, regardless if you have a crappy taste or not. It’s vital to keep exercising those muscles. It’s very unfortunate you have to go through this at this age, but you’ll get through the treatment, a young body recovers much quicker.

  • btinsman
    btinsman Member Posts: 2
    Thanks for the comments so

    Thanks for the comments so far, it's encouraging to know that I most likely won't lose my taste forever, I can deal with the recovery period as long as it comes back eventually ha. And also I never knew nor thought about my throat muscles getting weak and being unable to swallow I will have to make sure to get something down everyday from here on out I have noticed a slight difficultly in swallowing even water so thanks alot for that insight possibly saved me from even more torture ha. What kind of foods do you guys eat, the lack of saliva makes it difficult to eat solid foods which I'm sure you are all aware of. Thanks again in advanace you have been really helpful.

  • jcortney
    jcortney Member Posts: 503
    btinsman said:

    Thanks for the comments so

    Thanks for the comments so far, it's encouraging to know that I most likely won't lose my taste forever, I can deal with the recovery period as long as it comes back eventually ha. And also I never knew nor thought about my throat muscles getting weak and being unable to swallow I will have to make sure to get something down everyday from here on out I have noticed a slight difficultly in swallowing even water so thanks alot for that insight possibly saved me from even more torture ha. What kind of foods do you guys eat, the lack of saliva makes it difficult to eat solid foods which I'm sure you are all aware of. Thanks again in advanace you have been really helpful.

    Smoothies, milkshakes

    Anything to get you to swallow.  I'm having the same issue, just finished Rad #17 and swallowing is a chore (from throat pain) and trying hard to not fall into the trap of not swallowing.

     

    Joe Cortney

    Dallas, TX

  • lts
    lts Member Posts: 75
    jcortney said:

    Smoothies, milkshakes

    Anything to get you to swallow.  I'm having the same issue, just finished Rad #17 and swallowing is a chore (from throat pain) and trying hard to not fall into the trap of not swallowing.

     

    Joe Cortney

    Dallas, TX

    Same

    I am 18 of 15 rad treatments and eating is a battle of will power for me now. Taste is gone but we must eat. I do not have a pic nor do I want one so I will do all I can. Chew and swallow, chew and swallow...................!

    Luke

  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    jcortney said:

    Smoothies, milkshakes

    Anything to get you to swallow.  I'm having the same issue, just finished Rad #17 and swallowing is a chore (from throat pain) and trying hard to not fall into the trap of not swallowing.

     

    Joe Cortney

    Dallas, TX

    9 Months out.

    First off, Welcome to our little slice if the internet...your in good hands with allstate ...I mean all of us..lol

    I'm 9 months out of 33 rads and my taste is way off. I can eat anything that I did before ( except dry crackers)

    Iv'e even eaten spicy wings and currys. I think my problem is that my smell is way off as well due to a

    nasopharyangeal stenosis as I cannot breath through my nose so when I am eating I have to stop to

    take a breath. My Saliva is coming back alot quicker bur I still drink a little water with meals and the dry mouth

    is worse at night as I have to breathe through the mouth but I sleep all through the night and if I have to go to

    the bathroom I take a sip of water and go back to sleep.

    so I dream of drool on the pillow in the mornings and I'm just being patient that my taste will return

    LIFE IS GOOD.

    God bless

    Tonsil Dad,

    Dan.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    as a smart girl said here once "I have no sense of taste"

    btinsman,

     

    Greetings fellow H&N warrior, let us worry together for a moment.

     

    Old Matt

    Loved food, loved restaurants, had the best taste buds around (good as anybody)

     

    Treatment Matt

    No taste, PEG installed and in use plus drink 1 meal a day, plus lots and lots of water, lots.  Kept sampling foods constantly.

     

    Post Treatment Matt

    No taste, hate taste, can’t stand texture or feel of virtually all foods, very happy living off smoothies.  Always trying foods, some luck with sweet tea, corn on the cob and tomatoes (go figure). 

     

    All of a sudden, food feels ok again at approximately 7 months post.  Now at 9+ months post eating everything and taste buds are relearning.

     

    Still drinking lots and lots of water (never stopped) and it takes 2 -3 glasses per meal.

     

    Experimental Matt

    Transplant taste buds from a pig, it works but subjects tend to prefer slop instead of real food.

     

    Pragmatic Matt

    I was never mad or really sad about losing my taste buds, it was just the price to pay to fight cancer successfully.  I mean what are your options?  One very good un-kept secret is everyone at the H&N forum understands you and “gets it” when you bring up eating or taste issues.

     

    Best,

     

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    btinsman said:

    Thanks for the comments so

    Thanks for the comments so far, it's encouraging to know that I most likely won't lose my taste forever, I can deal with the recovery period as long as it comes back eventually ha. And also I never knew nor thought about my throat muscles getting weak and being unable to swallow I will have to make sure to get something down everyday from here on out I have noticed a slight difficultly in swallowing even water so thanks alot for that insight possibly saved me from even more torture ha. What kind of foods do you guys eat, the lack of saliva makes it difficult to eat solid foods which I'm sure you are all aware of. Thanks again in advanace you have been really helpful.

    I ate, or at least tried

    a number of things during treatment.  I had the best luck with creamy soups....tho mac and cheese with milk in it to make it soupy worked, too.  My sister made me cauliflower and cheese soup (which shockingly, I could taste!)....Shrimp salad made with pasta was a good one, too.  Instead of water, I washed everything down with whole milk.....more nutrition, more calories, and and strangely enough, I could kinda taste milk, too.....you can always wash down an Ensure, too....just as long as you're swallowing something.

    p

  • donfoo
    donfoo Member Posts: 1,771 Member
    CivilMatt said:

    as a smart girl said here once "I have no sense of taste"

    btinsman,

     

    Greetings fellow H&N warrior, let us worry together for a moment.

     

    Old Matt

    Loved food, loved restaurants, had the best taste buds around (good as anybody)

     

    Treatment Matt

    No taste, PEG installed and in use plus drink 1 meal a day, plus lots and lots of water, lots.  Kept sampling foods constantly.

     

    Post Treatment Matt

    No taste, hate taste, can’t stand texture or feel of virtually all foods, very happy living off smoothies.  Always trying foods, some luck with sweet tea, corn on the cob and tomatoes (go figure). 

     

    All of a sudden, food feels ok again at approximately 7 months post.  Now at 9+ months post eating everything and taste buds are relearning.

     

    Still drinking lots and lots of water (never stopped) and it takes 2 -3 glasses per meal.

     

    Experimental Matt

    Transplant taste buds from a pig, it works but subjects tend to prefer slop instead of real food.

     

    Pragmatic Matt

    I was never mad or really sad about losing my taste buds, it was just the price to pay to fight cancer successfully.  I mean what are your options?  One very good un-kept secret is everyone at the H&N forum understands you and “gets it” when you bring up eating or taste issues.

     

    Best,

     

    Matt

    Experimental Matt
    Transplant

    Experimental Matt

    Transplant taste buds from a pig, it works but subjects tend to prefer slop instead of real food.


    I guess this one is a tradeoff - so how does slop taste like? LOL

    With tastebuds so out of whack what does really strongly flavored things taste like? Does it just make things taste worse? If you eat Indian, there are those really strong pickled items. Would those taste so bad you gag or still no taste from anything?

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    donfoo said:

    Experimental Matt
    Transplant

    Experimental Matt

    Transplant taste buds from a pig, it works but subjects tend to prefer slop instead of real food.


    I guess this one is a tradeoff - so how does slop taste like? LOL

    With tastebuds so out of whack what does really strongly flavored things taste like? Does it just make things taste worse? If you eat Indian, there are those really strong pickled items. Would those taste so bad you gag or still no taste from anything?

    tonight we eat

    It all depends where you are on the taste pyramid.  At my lowest taste sensation everything tasted and felt like Crisco shortening, barley could any taste get through; I hated pretty much everything but my smoothies.  It was the blasted awful texture and feel as much as the taste no taste.  It is complicated for layman (family & friends) to understand, but people on the H&N forum do understand.

     

    Funny thing, over the summer I did find satisfaction in tomatoes drenched in olive oil with a heavy sprinkling of cayenne pepper.

     

    Warning:  No pigs lost their life in the making of this thread (at least not by me).

     

    Good luck in your journey down Taste Bud Lane, it is not guaranteed to be flavorful, but it is unforgettable.

     

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    CivilMatt said:

    tonight we eat

    It all depends where you are on the taste pyramid.  At my lowest taste sensation everything tasted and felt like Crisco shortening, barley could any taste get through; I hated pretty much everything but my smoothies.  It was the blasted awful texture and feel as much as the taste no taste.  It is complicated for layman (family & friends) to understand, but people on the H&N forum do understand.

     

    Funny thing, over the summer I did find satisfaction in tomatoes drenched in olive oil with a heavy sprinkling of cayenne pepper.

     

    Warning:  No pigs lost their life in the making of this thread (at least not by me).

     

    Good luck in your journey down Taste Bud Lane, it is not guaranteed to be flavorful, but it is unforgettable.

     

    Matt

    Ya know, Don...

    ...for me, the blander stuff had more taste than the strong flavors.  My sister used to make me Magic Mineral broth....to her it was very bland....to me it was manna from heaven.  I could also taste milk all thru radiation and drank a half gallon a day.  Even today, months later, stronger flavors have more sensation than taste.  I've tried Mexican 3 times experimentally, and all I can taste is chili powder....can't taste the other spices....and generally it's too hot, anyway.  I tried getting it more tasty with salsa, and all that did was hurt...LOL.  I'm determined tho, so will keep trying.

    p

  • phrannie51
    phrannie51 Member Posts: 4,716
    CivilMatt said:

    tonight we eat

    It all depends where you are on the taste pyramid.  At my lowest taste sensation everything tasted and felt like Crisco shortening, barley could any taste get through; I hated pretty much everything but my smoothies.  It was the blasted awful texture and feel as much as the taste no taste.  It is complicated for layman (family & friends) to understand, but people on the H&N forum do understand.

     

    Funny thing, over the summer I did find satisfaction in tomatoes drenched in olive oil with a heavy sprinkling of cayenne pepper.

     

    Warning:  No pigs lost their life in the making of this thread (at least not by me).

     

    Good luck in your journey down Taste Bud Lane, it is not guaranteed to be flavorful, but it is unforgettable.

     

    Matt

    Ya know, Don...

    Oops, my clicker finger got the best of me...Laughing

  • donfoo
    donfoo Member Posts: 1,771 Member
    CivilMatt said:

    tonight we eat

    It all depends where you are on the taste pyramid.  At my lowest taste sensation everything tasted and felt like Crisco shortening, barley could any taste get through; I hated pretty much everything but my smoothies.  It was the blasted awful texture and feel as much as the taste no taste.  It is complicated for layman (family & friends) to understand, but people on the H&N forum do understand.

     

    Funny thing, over the summer I did find satisfaction in tomatoes drenched in olive oil with a heavy sprinkling of cayenne pepper.

     

    Warning:  No pigs lost their life in the making of this thread (at least not by me).

     

    Good luck in your journey down Taste Bud Lane, it is not guaranteed to be flavorful, but it is unforgettable.

     

    Matt

    Sounds like fun!

    Actually looking forward to the challenge of seeing what concotions will taste the best. I hope some combo of this and that will offer some stimulation and cut through the taste killers. I have to get past the "Crisco shortening" experience, now, that sounds nasty!

    Don

  • Vee1
    Vee1 Member Posts: 59
    Maybe this???

    Hi,

    I add Benecalorie a 330 calorie supplement to anything I blend for my dad.  It is tasteless and only 1.5 ounces.  I add it to soups, Boost, blended cakes, pies, noodles...ANYthing that he can get down.  There is also a Very High Calorie Boost that is 530 calories that I order online. (Both from Amazon).  I squirt in a bit of ice cream flavoring in the vanilla boost (adds another 100 calories) or peanut butter or heavy cream.  Right now it is all about calories not eating "healthy" for us...not everybody can/should do this, but it is another idea to ponder.

    23...

    and that is unfair no matter what.

    -V

     

  • Vee1
    Vee1 Member Posts: 59
    one more thing...

    Dad has found that "cold" does not work for him and things need to be nuked for about 15-30 seconds.  Cold seems to hurt to swallow...

    -V

  • blackswampboy
    blackswampboy Member Posts: 341
    120 lbs.

    based on my experience...don't worry about taste--it'll come back when it comes.

    worry about weight and calories.

    I dropped down to 115 lbs. myself, and my docs threatened me with hospitalization and feeding via IV tube. yikes! I started pumping calories into my PEG tube (minimum 1700/day, but 2000+ is better) and the weight started coming back. the weight gives you the strength to recover, and then worry about things like getting your taste back.

    yes, fighting the beast at age 23 is a rough hand to be dealt. get your strength up and whup this thing. we're pulling for you! 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    The Food Bucket List

    It was nice to read the encouraging responses to the OP. You're a young guy to be going through this b....

     

    Having yet to begin treatments, I can't really imagine what this is going to be like until it actually happens. I've had bad colds where my tase was surpressed but I've not had my taste buds and salivary glands nuked before either.

    It's encouraging to know that it will eventually come back even if it's not 100%, and knowing that spicy foods still will be eatable makes my obsession with Thai food a future goal!

    I have the feeling I'll be living off smoothies for a while though ;(

     

     

  • jcortney
    jcortney Member Posts: 503
    fishmanpa said:

    The Food Bucket List

    It was nice to read the encouraging responses to the OP. You're a young guy to be going through this b....

     

    Having yet to begin treatments, I can't really imagine what this is going to be like until it actually happens. I've had bad colds where my tase was surpressed but I've not had my taste buds and salivary glands nuked before either.

    It's encouraging to know that it will eventually come back even if it's not 100%, and knowing that spicy foods still will be eatable makes my obsession with Thai food a future goal!

    I have the feeling I'll be living off smoothies for a while though ;(

     

     

    As of today, officially off of most food

    Woke up this morning with my tongue burning like crazy.  Finally got that under control with mouth rinses and Muguard but found out at lunch anything I tried burned the hell out of my tongue.  So, today was Rad number 19 (11 to go) and it looks like feeding tube and milkshakes are all that's left.  And I so do love food.  <sigh>.

     

     

    Joe Cortney

    Dallas, TX

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    jcortney said:

    As of today, officially off of most food

    Woke up this morning with my tongue burning like crazy.  Finally got that under control with mouth rinses and Muguard but found out at lunch anything I tried burned the hell out of my tongue.  So, today was Rad number 19 (11 to go) and it looks like feeding tube and milkshakes are all that's left.  And I so do love food.  <sigh>.

     

     

    Joe Cortney

    Dallas, TX

    Try Scandia shakes!!

    You can order Scandia shakes (or your cancer center pharmacy may have them) which gives you 600 cals. using  8 oz.whole milk or for added calories you could add ice cream or whipping cream.  They are delicious and will help keep your calories up!  They come in vanilla, strawberry or chocolate, at least they used to.