very slow taste bud returns

whoisjohngalt

I am 10 weeks post treatment and feeling good except for my taste buds not really coming back. I can discern tastes on nearly all foods but the taste remains awful, to the point I'm not really eating solid foods. I drink 2 shakes a day but am really getting sick of them as well. I have read and re-read the other taste bud topics on this site but am still grasping for answers I may not get. I am getting really, really worried that I might be one of those who's taste bud never returns, and I'm not sure I can handle living the remaining years of my life this way. I have no energy, and am tired all of the time and am positive it is due to nutrition deficiency. I am 59 going on 75!

Does anyone have any idea what percent of people never get their tastes back to acceptable levels? I have looked everywhere for this answer with no luck. None of my doctors will give me an estimate either. I know I'm supposed to feel lucky I am still alive but at this point it sure does not feel like it.

Thank you for any advice or info you can share with me.

Iskander

Oil Pulling

I finished radiation at the end of May.  In eight weeks, I can say my tastebuds have returned.  I remember testing myself by choking down a Reese's Peanut Butter cup and it tasted like sawdust...a couple weeks ago, I tasted the whole thing. Throughout my treatment and to date, before bed, I would swish 10-20ml olive oil mixed with sunflower oil (available at the supermarket-its the mildest flavor) around my mouth for 30minutes and spit it out.  my mouth sores cleared up within a the three horrible weeks I was still cooking post surgery and my tastebuds are back.  I also think it helps with dry-mouth. 

Oil Pulling.  Google it. 

debbiel0

If your lack of taste/ good

If your lack of taste/ good taste is due to a buildup of plaque on your tongue caused by lack of saliva, here are a few things that were recommended to me and each helped a little..

Using sprays like Biotene, to keep my mouth moist

Limiting my dairy based smoothies, cut back on yogurt and milk

 

Pineapple will cut through the mucus and thickness of the build up, but is very acidic and can quickly cause mouth sores so use it cautiously.

 

 

Using a tongue scrapper

Having a thorough dental cleaning once a month

 

My taste didn’t come back until my saliva came back and  the buildup was gone. Now everything has a new intense taste.

 

Also, I am sure you have heard it before, but 10 weeks and eating is a HUGE accomplishment to some of us that had a hard time. Give yourself time, and don't be too hard on yourself. As difficult as it is somedays, try to celebrate all of the small steps forward. It does get better!

 

I hope you are having a good day!

 

 

 

 

Dean54

Not for everybody it doesn't

I'm 10 months from my treatments and still have pratically no taste and what I do have is distorted and very little saliva. If I eat anything that isn't soup or super saucy I have to just chew it up and swallow it with water and yes, every meal is a chore. I'm a weight lifter and it isn't easy getting enough calories and hate to always sound like a downer, but don't believe it will get any better at this point.

I ran into a former work buddy from years ago and he had the exact same cancer as I did and he said he's two years out and still no taste.

debbiel0

Dean54 said:

Not for everybody it doesn't

I'm 10 months from my treatments and still have pratically no taste and what I do have is distorted and very little saliva. If I eat anything that isn't soup or super saucy I have to just chew it up and swallow it with water and yes, every meal is a chore. I'm a weight lifter and it isn't easy getting enough calories and hate to always sound like a downer, but don't believe it will get any better at this point.

I ran into a former work buddy from years ago and he had the exact same cancer as I did and he said he's two years out and still no taste.

Sorry, I should have said

Sorry, I should have said "may" get better. At 11 months out, I also still struggle with eating. At 10 weeks out, I was still on a nothing by mouth order, PEG tube only and in hospital for malnutrition and dehydration..  10 months out I still had my feeding tube but was able to get minimal soft runny foods down. So I get it. Just looking back, I am in a  much better place now.  I am trying new foods and combinations that were never on my menu b4. I guess I was trying to express hope mixed with some luck and old fashion stubbornness to find something that works! was hoping to give a small ray of hope, however misguided. 

Sorry if I offended you Dean54, and truly hope you find something that works for you.I know its hard. I struggle too. 

 

Dean54

No you didn't offend me Debbie and sorry if I came off that way

I have lots to be thankful for as I didn't even have to use the feeding tube, hardly any mouth sores, no rad. burns, could exercise thru most of the treatment. I WAS hoping for more in the taste dept. but knew going in what the outcome could be.

Just thankful to be alive even if it does get frustrating hearing other people talk about this wonderful meal with only memories about how it would or did taste.

donfoo

trip to buffet

There is no better way to find out what kind of food might go down without a fight. Head to the nearby buffet and try a spoonful of everything. You'll at least find some solid food that you can start with.

whoisjohngalt

Dean54 said:

Not for everybody it doesn't

I'm 10 months from my treatments and still have pratically no taste and what I do have is distorted and very little saliva. If I eat anything that isn't soup or super saucy I have to just chew it up and swallow it with water and yes, every meal is a chore. I'm a weight lifter and it isn't easy getting enough calories and hate to always sound like a downer, but don't believe it will get any better at this point.

I ran into a former work buddy from years ago and he had the exact same cancer as I did and he said he's two years out and still no taste.

Dean, does your food taste

Dean, does your food taste awful or just have no taste at all? Do you have any food at all that tastes even somewhat good? Do you get most of your nourishment from shakes? My saliva comes and goes but I notice my lips are always dry, constantly putting chapstick on.

whoisjohngalt

debbiel0 said:

Sorry, I should have said

Sorry, I should have said "may" get better. At 11 months out, I also still struggle with eating. At 10 weeks out, I was still on a nothing by mouth order, PEG tube only and in hospital for malnutrition and dehydration..  10 months out I still had my feeding tube but was able to get minimal soft runny foods down. So I get it. Just looking back, I am in a  much better place now.  I am trying new foods and combinations that were never on my menu b4. I guess I was trying to express hope mixed with some luck and old fashion stubbornness to find something that works! was hoping to give a small ray of hope, however misguided. 

Sorry if I offended you Dean54, and truly hope you find something that works for you.I know its hard. I struggle too. 

 

debbie

So what does your food taste like? Are some foods still awful or close to normal? I understand it is a slow process but based on your experience asre you confident it will return to normal? Is your salive getting better at the same rate as your taste buds? Do you still get any nutrition from shakes are is it all from solid food?

Thank you

whoisjohngalt

donfoo said:

trip to buffet

There is no better way to find out what kind of food might go down without a fight. Head to the nearby buffet and try a spoonful of everything. You'll at least find some solid food that you can start with.

donfoo

Does your food taste normal now? How long did it take? Does any food taste bad to you now that you loved before?

Thank you

OKCnative

While my taste remained

While my taste remained pretty much intact my entire treatment - I do recall some advice I was given early on..... "Don't eat your favorite foods while going through treatment or while your taste buds are wonky." The idea was that if you do, you'll never like those foods the same way again.

Boy, I can say that's true with just a couple of foods I really liked prior to treatment. We used to drink "green shakes" all the time as a healthy meal replacement. Now, just the smell of them takes me back to treatment and I get ill. Same goes for soft eggs.

whoisjohngalt

OKCnative said:

While my taste remained

While my taste remained pretty much intact my entire treatment - I do recall some advice I was given early on..... "Don't eat your favorite foods while going through treatment or while your taste buds are wonky." The idea was that if you do, you'll never like those foods the same way again.

Boy, I can say that's true with just a couple of foods I really liked prior to treatment. We used to drink "green shakes" all the time as a healthy meal replacement. Now, just the smell of them takes me back to treatment and I get ill. Same goes for soft eggs.

OKCnative

LOL.....yes I am experiencing that as well!

debbiel0

whoisjohngalt said:

debbie

So what does your food taste like? Are some foods still awful or close to normal? I understand it is a slow process but based on your experience asre you confident it will return to normal? Is your salive getting better at the same rate as your taste buds? Do you still get any nutrition from shakes are is it all from solid food?

Thank you

Most foods are very intense

Most foods are very intense in flavour. I have to be really careful with any sort of spice or 'heat'. Food is not so much awful tasting, just maybe a bit boring/bland now so not so appealing.

My dentist explained it is like having a new tongue. Starting all over, like a child. Experimenting with different flavours to see which ones you like. Or remember.

Foods that are aromatic, eg: fresh green peppers and cucumber are very much as I remember them tasting.

My saliva is getting better. I still carry a water bottle around with me all day, but don't have to fill it as often as I did earlier on. 

I still need at least two glasses of water with each meal. That is habit now, so not so annoying. I expect this to be a way of life now, so if it does get better, it will be a bonus.

I still use shakes for some nutrition. Not everyday now, but I like them, and they are easy for a quick meal or snack on the run or if I have had a low calorie day.

Meat is still a challenge, but I do get down one or two bites. Shell fish go down real easy ( of course nothing but the expensive stuff for me!)  Fish, salmon, halibut, not so easy.  Lightly stir fried veg is my main meal, which is a healthy side effect. Would love to be eating peanuts!

The way I can describe what  I have success with is  food that 'clumps' when you chew it. . eg: dense bread ( like bagels) or moist food (like tomatoes)  things that shred when you chew them eg: meat, nuts,  are more difficult. If that makes any sense to you.

A bit of background: I had a feeding tube for 10 months. The first two+ months I was not allowed anything by mouth. My dentist and speach therapist attribute that to the cause of the build up of plaque on my tongue that inhibited any taste for a long time.   I also have a lot of food allergies, so it made introducing soft foods with enough calories a challenge. I lost close to 70 lbs, of which I have regained 2.  I will be one year post treatment next week.

Keep trying new things. I take a small portion of the 'family meal' every day. I am noticing an improvement, not weekly, but at least monthly.

Hope you are seeing some improvement too.

 

Deb

 

whoisjohngalt

debbiel0 said:

Most foods are very intense

Most foods are very intense in flavour. I have to be really careful with any sort of spice or 'heat'. Food is not so much awful tasting, just maybe a bit boring/bland now so not so appealing.

My dentist explained it is like having a new tongue. Starting all over, like a child. Experimenting with different flavours to see which ones you like. Or remember.

Foods that are aromatic, eg: fresh green peppers and cucumber are very much as I remember them tasting.

My saliva is getting better. I still carry a water bottle around with me all day, but don't have to fill it as often as I did earlier on. 

I still need at least two glasses of water with each meal. That is habit now, so not so annoying. I expect this to be a way of life now, so if it does get better, it will be a bonus.

I still use shakes for some nutrition. Not everyday now, but I like them, and they are easy for a quick meal or snack on the run or if I have had a low calorie day.

Meat is still a challenge, but I do get down one or two bites. Shell fish go down real easy ( of course nothing but the expensive stuff for me!)  Fish, salmon, halibut, not so easy.  Lightly stir fried veg is my main meal, which is a healthy side effect. Would love to be eating peanuts!

The way I can describe what  I have success with is  food that 'clumps' when you chew it. . eg: dense bread ( like bagels) or moist food (like tomatoes)  things that shred when you chew them eg: meat, nuts,  are more difficult. If that makes any sense to you.

A bit of background: I had a feeding tube for 10 months. The first two+ months I was not allowed anything by mouth. My dentist and speach therapist attribute that to the cause of the build up of plaque on my tongue that inhibited any taste for a long time.   I also have a lot of food allergies, so it made introducing soft foods with enough calories a challenge. I lost close to 70 lbs, of which I have regained 2.  I will be one year post treatment next week.

Keep trying new things. I take a small portion of the 'family meal' every day. I am noticing an improvement, not weekly, but at least monthly.

Hope you are seeing some improvement too.

 

Deb

 

Thanks Deb, I appreciate you

Thanks Deb, I appreciate you taking time to share with me! It helps hearing of others experiences.

AnotherSurvivor

My very experienced oncs and

My very experienced oncs and ENT told me it would take about a year to fully recover.  I was impatient with that and expected things to move quicker the whole year.  At 20 months post things are still improving, but at a much slower rate, and day-to-day can be variable.  Probably that was true prior to treatment, but I just didn't notice.  There were times, especially in the first few months when I was afraid that nothing would come back.

Today my saliva is very close to normal.  Yesterday I was so dry that xylimelts didn't melt.  I was working outside and it was hot, so probably wasn't drinking enough water until evening.  Evening was spent watching sunset over a couple of cocktails based on some potion that I had never heard of, seems they can distill poblano pepper juice.  It tasted pretty good with ice and soda water.  It's easy to prescribe patience now, but mostly I would say be patient, and don't give up hope.  Time and extra protein in your diet are going to do more for recovery than anything else.  I still do protein shakes by the way.  I use them as creme for my coffee, and as before treatment drink far too much coffee, but with the shake it is now a healthfood drink.

tommyodavey

OKCnative said:

While my taste remained

While my taste remained pretty much intact my entire treatment - I do recall some advice I was given early on..... "Don't eat your favorite foods while going through treatment or while your taste buds are wonky." The idea was that if you do, you'll never like those foods the same way again.

Boy, I can say that's true with just a couple of foods I really liked prior to treatment. We used to drink "green shakes" all the time as a healthy meal replacement. Now, just the smell of them takes me back to treatment and I get ill. Same goes for soft eggs.

Shakes

Good point OKC, avoid the stuff you liked before.  In the past I used to drink Ensure as a quick meal if I was in a hurry.  The stuff makes me gag now and the only way I'll ever eat it again would be though a feeding tube.

Everyone has a different experience with their taste buds returning or not.  With me it only took a few months to get maybe 90%. Even now, almost 7 years later I can't handle too spicy foods.  My father in law had SCC with 35 rads.  No taste for 2 years but they came back.  So don't give up hope just yet.  

SuzJ

So...

.. whats a tastebud?

Dean54

I was told

That what ever you get back the first year is about is as good as it gets and I sure hope they are wrong and some you are right about still having a chance.

About a month or two ago my taste started to get better and gave me some hope and now it's going the other way almost daily and where I had close to 30-40% I said I'd be lucky to have 10% now for some reason.

I hate to think about my kidney function with all the salt I eat trying to taste at least SOMETHING.

Dean54

Exactly SuzJ

I take it yours are far from back also? I seem to take a step foward then 2 back in this regard. And, whats up with the fact that on occasion if I can taste something, it's only for a bite or 2, like you used up the couple of taste buds you had?

SuzJ

Taste kinda came back

for a while there, the taste was back, I leaned more towards salty and sour, then I did a swing towards sweet, now it seems they have gone again. I finished treatment in May 2017, had modified radical neck dissection August 2017 - they say the best you are going to be is a year out..

 

So I'm kinda used to the fact that it's gone, I do get the odd flavors, like Hostess lemon Pound Cake.. that's wonderful! some days, others not so much, and it goes down easy. Cheerios for breakfast - not because they taste good, but they crunch!

whoisjohngalt

SuzJ said:

Taste kinda came back

for a while there, the taste was back, I leaned more towards salty and sour, then I did a swing towards sweet, now it seems they have gone again. I finished treatment in May 2017, had modified radical neck dissection August 2017 - they say the best you are going to be is a year out..

 

So I'm kinda used to the fact that it's gone, I do get the odd flavors, like Hostess lemon Pound Cake.. that's wonderful! some days, others not so much, and it goes down easy. Cheerios for breakfast - not because they taste good, but they crunch!

SuzJ

So how do you get most of your nutrition? Shakes? I am having a very hard time excepting that this might be lot for the rest of my life. I am so frustrated and angry, I wish I would have taken my chances after surgery and not completed the radiation.