Saliva and taste....does it get better?
I can taste very little at this point and most food burns my tongue. The dry mouth is particularly frustrating as I talk a lot for my job.Can any of you give me hope and an idea of how long it will take for my mouth to get to where I feel I can kiss my Wife passionately again and truly enjoy steak and a beer?
Hopeful day by day,
Brian
Comments
-
Yes.....
But unfortunately for you not for several weeks....
I also didn't have a PEG, drank a lot of Ensure Plus, water and a few sliced peaches....
Even for a good month or longer after rads, it was pretty much the same, even water tasted like sweat. I had to sip water with each bite of food, and carrying a bottle of water with you is going to be the norm for awhile.
But it does get better, I'm nearly two years post rads and have somewhere around 90 - 95% of both taste and saliva back.
It comes back slowly, a little at a time. When something doesn't taste as it did, put it on the back burner and stick with things that do.
It's trial and error, but I have nearly everything back the same or close to what it was. Burger King Double Cheeseburgers was one of the first on my list, LOL....
I do enjot a cold beer occasionally, and everything else. Probably the slowest to come back was sweet stuff especially ice cream, that never did come back to what it was for some reason.
But believe me, I can definitely thrive and survive on what I have, more thgan likely you will also.
If you aren't recording food channels and watching them while you drool non-existant saliva, you haven't hit rock bottom like the majority of us have....LOL.
You'll get there....I can remember only having white foam that I souldn't spit out of my mouth it was so sticky. Now I can produce clear liquid saliva at will and even spit it out a good distance...LOL, you will too....
Best,
John0 -
JohnSkiffin16 said:Yes.....
But unfortunately for you not for several weeks....
I also didn't have a PEG, drank a lot of Ensure Plus, water and a few sliced peaches....
Even for a good month or longer after rads, it was pretty much the same, even water tasted like sweat. I had to sip water with each bite of food, and carrying a bottle of water with you is going to be the norm for awhile.
But it does get better, I'm nearly two years post rads and have somewhere around 90 - 95% of both taste and saliva back.
It comes back slowly, a little at a time. When something doesn't taste as it did, put it on the back burner and stick with things that do.
It's trial and error, but I have nearly everything back the same or close to what it was. Burger King Double Cheeseburgers was one of the first on my list, LOL....
I do enjot a cold beer occasionally, and everything else. Probably the slowest to come back was sweet stuff especially ice cream, that never did come back to what it was for some reason.
But believe me, I can definitely thrive and survive on what I have, more thgan likely you will also.
If you aren't recording food channels and watching them while you drool non-existant saliva, you haven't hit rock bottom like the majority of us have....LOL.
You'll get there....I can remember only having white foam that I souldn't spit out of my mouth it was so sticky. Now I can produce clear liquid saliva at will and even spit it out a good distance...LOL, you will too....
Best,
John
Big thanks for your post! Sincerely.0 -
JohnSkiffin16 said:Yes.....
But unfortunately for you not for several weeks....
I also didn't have a PEG, drank a lot of Ensure Plus, water and a few sliced peaches....
Even for a good month or longer after rads, it was pretty much the same, even water tasted like sweat. I had to sip water with each bite of food, and carrying a bottle of water with you is going to be the norm for awhile.
But it does get better, I'm nearly two years post rads and have somewhere around 90 - 95% of both taste and saliva back.
It comes back slowly, a little at a time. When something doesn't taste as it did, put it on the back burner and stick with things that do.
It's trial and error, but I have nearly everything back the same or close to what it was. Burger King Double Cheeseburgers was one of the first on my list, LOL....
I do enjot a cold beer occasionally, and everything else. Probably the slowest to come back was sweet stuff especially ice cream, that never did come back to what it was for some reason.
But believe me, I can definitely thrive and survive on what I have, more thgan likely you will also.
If you aren't recording food channels and watching them while you drool non-existant saliva, you haven't hit rock bottom like the majority of us have....LOL.
You'll get there....I can remember only having white foam that I souldn't spit out of my mouth it was so sticky. Now I can produce clear liquid saliva at will and even spit it out a good distance...LOL, you will too....
Best,
John
Big thanks for your post! Sincerely.0 -
Hi BrianSkiffin16 said:Yes.....
But unfortunately for you not for several weeks....
I also didn't have a PEG, drank a lot of Ensure Plus, water and a few sliced peaches....
Even for a good month or longer after rads, it was pretty much the same, even water tasted like sweat. I had to sip water with each bite of food, and carrying a bottle of water with you is going to be the norm for awhile.
But it does get better, I'm nearly two years post rads and have somewhere around 90 - 95% of both taste and saliva back.
It comes back slowly, a little at a time. When something doesn't taste as it did, put it on the back burner and stick with things that do.
It's trial and error, but I have nearly everything back the same or close to what it was. Burger King Double Cheeseburgers was one of the first on my list, LOL....
I do enjot a cold beer occasionally, and everything else. Probably the slowest to come back was sweet stuff especially ice cream, that never did come back to what it was for some reason.
But believe me, I can definitely thrive and survive on what I have, more thgan likely you will also.
If you aren't recording food channels and watching them while you drool non-existant saliva, you haven't hit rock bottom like the majority of us have....LOL.
You'll get there....I can remember only having white foam that I souldn't spit out of my mouth it was so sticky. Now I can produce clear liquid saliva at will and even spit it out a good distance...LOL, you will too....
Best,
John
I am with John, yep it does get better and I sure enjoy tasting again. It may take you a few months after treatment stops before your taste starts to come back but once it does watch out. I was hooked on Chicken nuggets for almost 6 months just could not pass then by with out stopping and getting a 10 piece to go….
All the best
Hondo0 -
Brian
As John said, yes it does come back, although it's a slow and gradual process. I noticed a small improvement about 2-3 weeks post treatment.
I remember having my first pizza about 1 month out from treatment. It smelled soooo good and tasted like stale cardboard, disappointing to say the least. Now it tastes as good as it smells.
My taste is probably about 80-90% now at 9 months out. I can eat spicy food, just not as spicy as before.
As far as kissing your wife so passionately..... Cheers
Jimbo0 -
Most people get it backJimbo55 said:Brian
As John said, yes it does come back, although it's a slow and gradual process. I noticed a small improvement about 2-3 weeks post treatment.
I remember having my first pizza about 1 month out from treatment. It smelled soooo good and tasted like stale cardboard, disappointing to say the least. Now it tastes as good as it smells.
My taste is probably about 80-90% now at 9 months out. I can eat spicy food, just not as spicy as before.
As far as kissing your wife so passionately..... Cheers
Jimbo
Most people get it back within a few months. It takes a while, and it's hard to be patient. Where most others measured their progress in weeks, mine was in months and months. A lot here were eating pretty good within 6 months or so. I also enjoyed food and was a 'live to eat' girl, and it was torture not being able to eat at all for nine months. (not only was my mouth destroyed, but I have a stricture) You will just have to keep trying things from time to time. One day they will burn or taste horrible and then a few weeks (months for me) they will be better, than a few weeks more and they will be pretty normal. Alcohol is mostly still way to burny for my tongue. I can only do Baileys Irish cream with cream. I very rarely drink anyway tho, because with my other genetic blood disorder I have, I'm extra, extra susceptible to oral cancer, so they have told me no alcohol.
I had my left salivary glad removed and I am DRY. Like REALLY dry. I think I have tried almost every product. Bioteine still burns my mouth pretty bad, makes my eyes tear, but I use it. I have oramist, I have dry mouth gel, Biotiene oral balance gel, all kinds of stuff. Lasts for like two minutes and I'm dry as dust again. It's hard to me to talk for even five minutes. I cough constantly, and I always have a tickle that drives me nuts. I think when I'm out of the products I have, I need to try the Stoppers 4.
It shouldn't be that bad for you, because you probably have all your salivary glands. Most people get back to 75-80% or more saliva back within the year.
Lots of people here can eat pretty normally. It just takes time. I am almost 2 years out, and this last year, I have had major major improvements. This has been an exercise in patience. As for the kissing, I cannot help you there as the only man in my life is my Dog, Nizzy. My Hairless Chinese Crested. ;-)0 -
Yes
Brian, I am 6 mo post treatment. I can tell you from my experience, it does get better. As most has already mentioned, it takes a little time. It was probally about a month for me when things started to improve. Most of my taste have returned. Every once in a while I get that metal taste that I would experience during rad treatment. Not sure what brings that on, could be the metal in my mouth (which I have a lot). As fas as salava, I am just starting to see improvment in that area. I still keep water with me all the time, and still get up in the middle of the night about 4 times to use the bathroom and get a drink of water. THe change for me is I use to be awoke with a dry mouth, but now I am awoke with needing bladder releif. Hang in there, hopefully the change is nearby. Good Luck to you!
Debbie0 -
Kissing and beer drinkingDJG1 said:Yes
Brian, I am 6 mo post treatment. I can tell you from my experience, it does get better. As most has already mentioned, it takes a little time. It was probally about a month for me when things started to improve. Most of my taste have returned. Every once in a while I get that metal taste that I would experience during rad treatment. Not sure what brings that on, could be the metal in my mouth (which I have a lot). As fas as salava, I am just starting to see improvment in that area. I still keep water with me all the time, and still get up in the middle of the night about 4 times to use the bathroom and get a drink of water. THe change for me is I use to be awoke with a dry mouth, but now I am awoke with needing bladder releif. Hang in there, hopefully the change is nearby. Good Luck to you!
Debbie
do get back to normal at some point but some of your tastes will just change. You will discover that you just do not want to eat some of your old favorites. In turn you will discover new favorites. I don't like steak anymore and used to eat it constantly, things just change a little. 6-18 tOOOOOoooooo 24 months to get back to where you are going to baseline???????0 -
Old favorites - new favorites.ratface said:Kissing and beer drinking
do get back to normal at some point but some of your tastes will just change. You will discover that you just do not want to eat some of your old favorites. In turn you will discover new favorites. I don't like steak anymore and used to eat it constantly, things just change a little. 6-18 tOOOOOoooooo 24 months to get back to where you are going to baseline???????
Yes, that is so very true! Since I cannot eat or swallow everything I used to be able to , new favorites have developed. I am eating things I never cared for before, but now I routinely eat things I never did. (like bananas, sweet potatoes, avocados, cilantro, McCormick Curry Powder, pumpkin, oatmeal....)
My 'sweet' came back first, way faster than my savory. I used to not like sweets, but now I do.... That part is probably not the best thing. Lol.0 -
yes you will!
I'm a couple months past chemo/rads. Had beer last night, pizza for breakfast. One of my saliva glands got nuked, so I doubt that will ever be back to pre-C "normal," but I'm coping.
Yes, you will get your taste back (though of course everyone's different) and LOVE eating again. I only got nuked on my left side and STILL have some rad burn on tongue and cheek on my left, so I eat on the opposite side all I can, and recently went back to doing "magic mouthwash" a few times a day, especially awhile before eating.
It's tough but it'll happen!0 -
TASTE & SALIVA
Brian, I am 6 1/2 months post treatment. I had Rads to both sides of my neck. My biggest problem currently is very and I mean very little saliva. I hear from others that this may take up to two years to come back.
Most of my taste has returned with the exception of sweet and salty, so I am very carefull with the amount of salt I use. I have seen improvement with my eating each and every month. I am able to eat a variety of foods at a variety of resturants with little problem. My biggest problem with eating is I get too excited about eating and take to large of a bite, or take multiple bites and them try to swallow when I have too much food in my mouth. I was at PF Changs last nite and was eating so well I had to run to the bathroom and Yak up a bunch of chewed food I came very close to choking on. From then on I took very small bites of food, as I do not want my wife to have to do the Heimlich on me in the middle of a crowded resturant.
Long story short, It will get better over time, but you need to try new stuff all of the time and push through the difficulties of swallowing.
Best!!
Mike0 -
Food!!!!luv4lacrosse said:TASTE & SALIVA
Brian, I am 6 1/2 months post treatment. I had Rads to both sides of my neck. My biggest problem currently is very and I mean very little saliva. I hear from others that this may take up to two years to come back.
Most of my taste has returned with the exception of sweet and salty, so I am very carefull with the amount of salt I use. I have seen improvement with my eating each and every month. I am able to eat a variety of foods at a variety of resturants with little problem. My biggest problem with eating is I get too excited about eating and take to large of a bite, or take multiple bites and them try to swallow when I have too much food in my mouth. I was at PF Changs last nite and was eating so well I had to run to the bathroom and Yak up a bunch of chewed food I came very close to choking on. From then on I took very small bites of food, as I do not want my wife to have to do the Heimlich on me in the middle of a crowded resturant.
Long story short, It will get better over time, but you need to try new stuff all of the time and push through the difficulties of swallowing.
Best!!
Mike
I'm 12 weeks out from my final radiation as of last Tuesday and I have about 75% of my taste back (sweet is still really really wierd), some of my spit, some days are better than others though. Still carrying around a water bottle 24/7 but it's good for you anyway so I don't mind that. My taste started coming back around two weeks out and as soon as it did, I started trying to eat. It's still trial and error. What works today at noon may not work at 2pm. The one problem I'm still having is the blistering and inflamation. I'm not using my PEG tube any more but I do still have to take pain meds to eat. I seriously will try anything if I'm hungry for it, and if it doesn't work, will stop and go to something soft that I know I can eat. I use the magic mouthwash now more than I ever did during treatment and my doc prescribed some pure lidocain to rinse with and that seems to help with pain as well. Some days it seems like I'm not making any progress and I get frustrated but then I remember that a week ago, I still wasn't drinking my morning coffee and I am now and yesterday I chewed a piece of gum for the first time and was quite proud!!! It does get better. Keep on trying and you will find what works for you!
Hugs
Karen0 -
Old favorites - new favoritessweetblood22 said:Old favorites - new favorites.
Yes, that is so very true! Since I cannot eat or swallow everything I used to be able to , new favorites have developed. I am eating things I never cared for before, but now I routinely eat things I never did. (like bananas, sweet potatoes, avocados, cilantro, McCormick Curry Powder, pumpkin, oatmeal....)
My 'sweet' came back first, way faster than my savory. I used to not like sweets, but now I do.... That part is probably not the best thing. Lol.
Oh, LOL...thought you were referring to, "Kissing and Beer Drinking"
HEHE...
JG0 -
Uhm no.Skiffin16 said:Old favorites - new favorites
Oh, LOL...thought you were referring to, "Kissing and Beer Drinking"
HEHE...
JG
No kissin and no beer drinkin. Lol. Beer never tasted good to me and made me sick and pukey even if I only drank 1/4 cup.0 -
No Kissin....sweetblood22 said:Uhm no.
No kissin and no beer drinkin. Lol. Beer never tasted good to me and made me sick and pukey even if I only drank 1/4 cup.
Not what the Noodle says.....
Jazzy in my profile pic, wants a big Dawn Kiss...., when you make it to Florida. 0 -
Saliva and taste
Hi Brian,
Even after nearly twenty wonderful years I remember well your situation. I used O.T.C. artificial saliva spray for a short period of time. I was a teacher and like you needed to use my voice nearly all day long and the spray was helpful. At some point I felt I just didn't need it any longer.
Like you I was and am a lover of food. I too suffered from "hot mouth" and even the openning of a mustard jar would have me sweating from the top of my head to the point it would run down the sides of my face and comsuming anything like that would have my mouth feeling like an oven. This too, as with the lack of saliva, did pass but it took much longer and was very gradual. But, it did pass.
As to item three and what might be your "most passionate" concern, you and your wife will take care of that "when the time is right".
All the best to both of you and bon appetite. josh r.0 -
The Nizzmeister lies....Skiffin16 said:No Kissin....
Not what the Noodle says.....
Jazzy in my profile pic, wants a big Dawn Kiss...., when you make it to Florida.
No kissing dogs on the lips, I know where his mouth has been.
I adore that picture of Jasmine. It makes me laugh!0 -
I resemble these remarks...luv4lacrosse said:TASTE & SALIVA
Brian, I am 6 1/2 months post treatment. I had Rads to both sides of my neck. My biggest problem currently is very and I mean very little saliva. I hear from others that this may take up to two years to come back.
Most of my taste has returned with the exception of sweet and salty, so I am very carefull with the amount of salt I use. I have seen improvement with my eating each and every month. I am able to eat a variety of foods at a variety of resturants with little problem. My biggest problem with eating is I get too excited about eating and take to large of a bite, or take multiple bites and them try to swallow when I have too much food in my mouth. I was at PF Changs last nite and was eating so well I had to run to the bathroom and Yak up a bunch of chewed food I came very close to choking on. From then on I took very small bites of food, as I do not want my wife to have to do the Heimlich on me in the middle of a crowded resturant.
Long story short, It will get better over time, but you need to try new stuff all of the time and push through the difficulties of swallowing.
Best!!
Mike
Mike luv4lacrosse
I am in exactly the same place, saliva-wise. I got the maximum dose of radiation to both sides, and the saliva situation still sucks at one year out from treatment. I got down an entire Bacon Cheddar Cheeseburger at the Diamondback Grill the other night, but my swallow kept stalling because my bites were too large. Fortunately, the multiple-swallow trick, along with gulping large amounts of water, solved the problem and I didn't have to yak anything back up. Good thing, because this place has only one restroom, and it's way in the back and always occupied. So far, nothing has blocked my breathing, and nothing has panicked me. My smart-a**ed eldest, who is first-aid trained, says that as I can still breathe, my natural cough reflex is way stronger than what the Heimlich could do, and she's just gonna let me yak it up.
Deb0 -
One thing I still can't do.....D Lewis said:I resemble these remarks...
Mike luv4lacrosse
I am in exactly the same place, saliva-wise. I got the maximum dose of radiation to both sides, and the saliva situation still sucks at one year out from treatment. I got down an entire Bacon Cheddar Cheeseburger at the Diamondback Grill the other night, but my swallow kept stalling because my bites were too large. Fortunately, the multiple-swallow trick, along with gulping large amounts of water, solved the problem and I didn't have to yak anything back up. Good thing, because this place has only one restroom, and it's way in the back and always occupied. So far, nothing has blocked my breathing, and nothing has panicked me. My smart-a**ed eldest, who is first-aid trained, says that as I can still breathe, my natural cough reflex is way stronger than what the Heimlich could do, and she's just gonna let me yak it up.
Deb
After two years from treatment, I still can't do any "gulping" of large amounts of any liquid. Guess I haven't practised that procedure from the days of "old normal"........or maybe I don't really need to gulp liquids for any reason at all. But,hey, I'll give it a try.
Larry0 -
hijosh r. said:Saliva and taste
Hi Brian,
Even after nearly twenty wonderful years I remember well your situation. I used O.T.C. artificial saliva spray for a short period of time. I was a teacher and like you needed to use my voice nearly all day long and the spray was helpful. At some point I felt I just didn't need it any longer.
Like you I was and am a lover of food. I too suffered from "hot mouth" and even the openning of a mustard jar would have me sweating from the top of my head to the point it would run down the sides of my face and comsuming anything like that would have my mouth feeling like an oven. This too, as with the lack of saliva, did pass but it took much longer and was very gradual. But, it did pass.
As to item three and what might be your "most passionate" concern, you and your wife will take care of that "when the time is right".
All the best to both of you and bon appetite. josh r.
Hi Brian
Best person to ask is your consultant, i was reading a lot of stuff and getting worried and depressed,
to the extent i was going to stop the treatment , when i went for an appointment with the consultant he assured me that everyones treatment and dose level is different. So please have faith in your consultant and do not be scared to ask as many questions no matter how silly they may sound .
Good Luck
Ian0
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