Taste and saliva

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

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 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.

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

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

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.

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.

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 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?

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

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

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

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

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 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 ;(

 

 

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