Salivary Disfunction

oldvamp

Like all of you, swallowing is a major problem for me.  With little-to-no saliva, trying to eat breads or crackers or meat is almost impossible because the salivary enzymes that start the digestion process are missing.  Biotene products, and the like, don't work on this part of the eating dilemma, they last to hydrate the mouth for about 5 minutes and that's it.  The enzymes that our saliva produce are lingual lipase, salivary amylase (ptyalin) and salivary kallikrein.  Does anyone know of a replacement or substitute for these vital components?

I would give anything to be able to enjoy bbq chicken or Black Forest ham or even a burger!  Just to be able to grab a sandwich for my lunch with friends or have french toast for breakfast or even peanut butter and crackers for a snack would launch me into a happy dance!  (And forget about how happy my wife would be because her life would be simplified again - she is going crazy with this problem).

Any suggestions would be greatly appreciated.  Life is no longer simple.

Thank you for your help.

phrannie51

It seems we all have to figure

out what we can eat, or can't....what's comfortable to eat, actually.  I'm a souper....that is, I eat a LOT of soup...but I soak thick pieces of crusty French or Italian bread in my soup so I have the texture from the crust, and the taste of the bread.  With chicken....dark meat will go down better than white meat (but have water handy, chicken is dangerous ).  Fish goes down pretty easily, also. 

Cook pork/chicken/beef in the crock pot with gravy....I can get meat down fairly well if I have gravy with it.  Forget the hambergers....I know, a cheeseburger deluxe used to be my favorite food....and I've tired, but dang.....their tough to eat, and crumbly meat like burger seems to get inhaled somehow.  I always end up in a coughing fit.

I don't know how far out of treatment you are....but if it's only been a short time (with this disease, short time equals anything under a year)....be patient.  I've been getting saliva back gradually (and taste) since I got done with treatment 3 1/2 years ago.

p

wmc

Welcome to the H&N Group

Welcome, and also sorry you have to be here. So far it looks like you have gotten some great advice. I only had surgery and never had radiation or chemo. All the ones that have lost sliva or has reduced sliva, say they have to sip water with just about each bite. Many have gotten it back in time, not weeks but months and even years. 

This is the "new" you and it is a lot to take in and adjust to. I had to learn how to swallow, and speak all over again when they took out my larynx. For me, I learned that the sooner I accepted it the faster I healed. You have been through a lot and I was like Phrannie and went through  Cream of Chicken soup like you can't believe. It was concidered as a liquid diet and has so much more calories, double most other ones. I has lost weight and had went down to 126 lbs going into surgery and was not allowed anything by mouth for days. Not even an Ice chip and promised not to swallow. I had days when I could swallow, took in 3200 cal. a day. You might try going to a buffet to try many things and see which are the easiest to eat. Hang in there as it does get much better in time. If you have not read the Superthread [read only] at the top of the board is hav lots of information you might fine to help

Bill

oldvamp

Thanks for all the tips

It's so great to have people like you that know where I'm coming from and are so willing to share their experience and knowledge.  I only wish I could have discovered this site back when I was in treatment because I know it would have helped me get through the really hard, bleak, seemingly hopeless times.

Thanks to my amazing wife and tireless dog (Sadie) I managed to get back to the job I love by 2 1/2 months out.  By 3 months, I was back to my usual three 12 hr. shifts.  I'm a 66 1/2 year old ER Tech who has no desire to retire and isn't about to let this darn disease do me in.  I'm 5 1/2 months out so far and I've managed to get my weight back to almost pre-cancer, but it's a constant challange.  I still have zero appetite and struggle to get enough calories in to give me the energy I require.  My BFF (wife) keeps on relentlessly experimenting with my high cal but low carb diet in an all-out campaign to eliminate this bugger from our lives - but it's extremely hard.

Admittedly, I have always been a sweetaholic, but knowing that sugars feed cancer cells is a dilemma.  When I found out that cancer cells can ONLY feed/thrive on glucose, I was devistated.  Beating this monster once was bad enough, but now it seems that keeping it from returning is going to be just as difficult.  One thing I have learned is that our modern diets have sugar (or carcenogenic artificial sweetners) in everything we consume, whether we want it there or not.  You just have to be aware of what you're chowing down on.

Phrannie, I hear ya loud and clear about coughing...it's become my second language.  I'm trying to teach my wife cough-speak, but so far, she isn't getting it.

Bill, you had some very wise words.  I can see how my acceptance of the "New Me" will help me heal.

Peace and love,

Michael

 

 

 

phrannie51

oldvamp said:

Thanks for all the tips

It's so great to have people like you that know where I'm coming from and are so willing to share their experience and knowledge.  I only wish I could have discovered this site back when I was in treatment because I know it would have helped me get through the really hard, bleak, seemingly hopeless times.

Thanks to my amazing wife and tireless dog (Sadie) I managed to get back to the job I love by 2 1/2 months out.  By 3 months, I was back to my usual three 12 hr. shifts.  I'm a 66 1/2 year old ER Tech who has no desire to retire and isn't about to let this darn disease do me in.  I'm 5 1/2 months out so far and I've managed to get my weight back to almost pre-cancer, but it's a constant challange.  I still have zero appetite and struggle to get enough calories in to give me the energy I require.  My BFF (wife) keeps on relentlessly experimenting with my high cal but low carb diet in an all-out campaign to eliminate this bugger from our lives - but it's extremely hard.

Admittedly, I have always been a sweetaholic, but knowing that sugars feed cancer cells is a dilemma.  When I found out that cancer cells can ONLY feed/thrive on glucose, I was devistated.  Beating this monster once was bad enough, but now it seems that keeping it from returning is going to be just as difficult.  One thing I have learned is that our modern diets have sugar (or carcenogenic artificial sweetners) in everything we consume, whether we want it there or not.  You just have to be aware of what you're chowing down on.

Phrannie, I hear ya loud and clear about coughing...it's become my second language.  I'm trying to teach my wife cough-speak, but so far, she isn't getting it.

Bill, you had some very wise words.  I can see how my acceptance of the "New Me" will help me heal.

Peace and love,

Michael

 

 

 

Michael....I had a huge sweet

tooth prior to treatment.  Loved Maple Bars! LOVED ice cream!!  The Head and Neck cancer diet pretty much does a number on the sweet taster....took me 3 1/2 years to eat an orange (just started in the last month)....they're a tad tasteless which means they're probably really good (sweet)....but at least they don't taste awful as they did.  Icecream is worth 2 bites, and I can't do maple bars at all...too sweet/tasteless....too dry, and they fall apart when dipping in coffee .  Much as I miss my taste treats, I'm glad I don't have to use will power to keep away from the sweets.

p

CivilMatt

almost 4 years post

 

oldvamp,

I am in the same saliva camp as you, but I can enjoy all the food you mentioned with enough to drink. To be safe, I have to take a drink with virtually every bite. Even now, I on occasion get bold and think I can take two or three bites, but I can’t. At least not safely.

Keep eating, keep drinking, keep swallowing.

Matt

 

the_wife

oldvamp said:

Thanks for all the tips

It's so great to have people like you that know where I'm coming from and are so willing to share their experience and knowledge.  I only wish I could have discovered this site back when I was in treatment because I know it would have helped me get through the really hard, bleak, seemingly hopeless times.

Thanks to my amazing wife and tireless dog (Sadie) I managed to get back to the job I love by 2 1/2 months out.  By 3 months, I was back to my usual three 12 hr. shifts.  I'm a 66 1/2 year old ER Tech who has no desire to retire and isn't about to let this darn disease do me in.  I'm 5 1/2 months out so far and I've managed to get my weight back to almost pre-cancer, but it's a constant challange.  I still have zero appetite and struggle to get enough calories in to give me the energy I require.  My BFF (wife) keeps on relentlessly experimenting with my high cal but low carb diet in an all-out campaign to eliminate this bugger from our lives - but it's extremely hard.

Admittedly, I have always been a sweetaholic, but knowing that sugars feed cancer cells is a dilemma.  When I found out that cancer cells can ONLY feed/thrive on glucose, I was devistated.  Beating this monster once was bad enough, but now it seems that keeping it from returning is going to be just as difficult.  One thing I have learned is that our modern diets have sugar (or carcenogenic artificial sweetners) in everything we consume, whether we want it there or not.  You just have to be aware of what you're chowing down on.

Phrannie, I hear ya loud and clear about coughing...it's become my second language.  I'm trying to teach my wife cough-speak, but so far, she isn't getting it.

Bill, you had some very wise words.  I can see how my acceptance of the "New Me" will help me heal.

Peace and love,

Michael

 

 

 

My hubby is almost 5 months

My hubby is almost 5 months out. We have tried and given up on him eating any kind of meat or bread. It's just too hard. I'm adding protein in other forms, including dairy and protein powder. He eats eggs and oatmeal pretty well. When he's at work he just drinks Ensure, but at home I mix Nutren with other flavorful ingredients for smoothies. We still have quite a stockpile leftover from tube feedings. But yes, the list of ingredients on everything I use is questionable on sugar, etc. Oh well...I try not to worry about that.

I've been making homemade soups and found that pureed is best. But the taste of anything is never good and like you he really struggles with lack of saliva. I'm in the same boat as your wife - this is really frustrating! I think I have developed some kind of sympathy pains for lack of taste because nothing tastes good to me either and that is just too weird. 

I'm amazed that there aren't any good products out there for saliva. Seems like there'd be a good market for it. I've heard that putting a dab of coconut oil in your mouth can help. Haven't had hubby try it yet. I'm thinking you just let it melt in your mouth, swish it around and spit it out.

Like you he also has zero appetite. Zip. Nada. Zilch. I guess the good thing for him is that fortunately he was a little heavy before diagnosis so the weight loss was not too much of a problem. But I still make sure his smoothies are jam packed with protein and calories and that he is maintaining and not losing weight. He had a wellness check at work and according to their standards, he is overweight! Hard to believe!

Congrats on getting back to work! My hubby can't wait to retire. He is working part time, but is still quite weak from treatment and has yet to regain his stamina.

The road is long, but when you look back, you realize how far you've come. Keep going!

 

SASH

phrannie51 said:

Michael....I had a huge sweet

tooth prior to treatment.  Loved Maple Bars! LOVED ice cream!!  The Head and Neck cancer diet pretty much does a number on the sweet taster....took me 3 1/2 years to eat an orange (just started in the last month)....they're a tad tasteless which means they're probably really good (sweet)....but at least they don't taste awful as they did.  Icecream is worth 2 bites, and I can't do maple bars at all...too sweet/tasteless....too dry, and they fall apart when dipping in coffee .  Much as I miss my taste treats, I'm glad I don't have to use will power to keep away from the sweets.

p

An orange that lasts 3 1/2 years

I've never seen any piece of fruit stay fresh that long.

oldvampswyfe

the_wife said:

My hubby is almost 5 months

My hubby is almost 5 months out. We have tried and given up on him eating any kind of meat or bread. It's just too hard. I'm adding protein in other forms, including dairy and protein powder. He eats eggs and oatmeal pretty well. When he's at work he just drinks Ensure, but at home I mix Nutren with other flavorful ingredients for smoothies. We still have quite a stockpile leftover from tube feedings. But yes, the list of ingredients on everything I use is questionable on sugar, etc. Oh well...I try not to worry about that.

I've been making homemade soups and found that pureed is best. But the taste of anything is never good and like you he really struggles with lack of saliva. I'm in the same boat as your wife - this is really frustrating! I think I have developed some kind of sympathy pains for lack of taste because nothing tastes good to me either and that is just too weird. 

I'm amazed that there aren't any good products out there for saliva. Seems like there'd be a good market for it. I've heard that putting a dab of coconut oil in your mouth can help. Haven't had hubby try it yet. I'm thinking you just let it melt in your mouth, swish it around and spit it out.

Like you he also has zero appetite. Zip. Nada. Zilch. I guess the good thing for him is that fortunately he was a little heavy before diagnosis so the weight loss was not too much of a problem. But I still make sure his smoothies are jam packed with protein and calories and that he is maintaining and not losing weight. He had a wellness check at work and according to their standards, he is overweight! Hard to believe!

Congrats on getting back to work! My hubby can't wait to retire. He is working part time, but is still quite weak from treatment and has yet to regain his stamina.

The road is long, but when you look back, you realize how far you've come. Keep going!

 

Its an interesting journey

Like you, I have symapthy problems...salt burns, sugar is way to sour, can't swallow my pills they get stuck in my throat.I cough and gag right along with him (they say its old age, but I shrug, I think its all symapthy pains)...what really is going on there, is beyond me.. lol.

I've learned to make ketchup, bbq sauce, mayo and many other common foods without sugar and they are really good, in fact better than the real deal from the store..lol..(patting self on the back)

I add real butter (not margarine) to everything, to make it slippery (even his coffee gets some).. we use unprocessed coconut oil (cold pressed) extra virgin olive oil.  If anything he is trying to gain weight, not loose, so its a different and difficult battle.  Not only is he having  problems with taste, swallowing, smell etc, but he doesn't like to eat, so mind you, he has never liked food.  He went from about 157 to 128, he is 6' 1/2", and very lean, wish I had that problem.  So getting is weight up and keeping it up requires about a 3500 to 4000 cal per day regime per day.  We did get him up to 154, then he started refusing food and went to 144..he is now, thankfully, up to between 152 and 154.

The forums here I think helped him realize, he isn't alone, its hard, a person needs to learn to put 100% of themselves into nutrition and calories, the mental and emotional well-being of yourself and the person you are taking care of, not to forget to mention all the hard work you can muster into this venture, to keep them sane as well as yourself. 

Thank you for your kind words and encouragment.  Hopefully others my gleam some encouragment from them also.

Its hard as you know...  You are definetly in the right place.

the_wife

oldvampswyfe said:

Its an interesting journey

Like you, I have symapthy problems...salt burns, sugar is way to sour, can't swallow my pills they get stuck in my throat.I cough and gag right along with him (they say its old age, but I shrug, I think its all symapthy pains)...what really is going on there, is beyond me.. lol.

I've learned to make ketchup, bbq sauce, mayo and many other common foods without sugar and they are really good, in fact better than the real deal from the store..lol..(patting self on the back)

I add real butter (not margarine) to everything, to make it slippery (even his coffee gets some).. we use unprocessed coconut oil (cold pressed) extra virgin olive oil.  If anything he is trying to gain weight, not loose, so its a different and difficult battle.  Not only is he having  problems with taste, swallowing, smell etc, but he doesn't like to eat, so mind you, he has never liked food.  He went from about 157 to 128, he is 6' 1/2", and very lean, wish I had that problem.  So getting is weight up and keeping it up requires about a 3500 to 4000 cal per day regime per day.  We did get him up to 154, then he started refusing food and went to 144..he is now, thankfully, up to between 152 and 154.

The forums here I think helped him realize, he isn't alone, its hard, a person needs to learn to put 100% of themselves into nutrition and calories, the mental and emotional well-being of yourself and the person you are taking care of, not to forget to mention all the hard work you can muster into this venture, to keep them sane as well as yourself. 

Thank you for your kind words and encouragment.  Hopefully others my gleam some encouragment from them also.

Its hard as you know...  You are definetly in the right place.

oldvampswyfe,
Glad to hear

oldvampswyfe,

Glad to hear I'm not the only one with mysterious symptoms. My ENT says I have burning tongue...very strange numbing slightly burning feeling. At times my taste is greatly diminished - only the strong flavors come through. It comes and goes. I think it's purely psychological and due to extreme stress. It's strange what stress does to a person. 

My hubby hates to eat, too, but he wasn't that way before. I have to prompt and nag him to lift the fork before his food is completely cold. I'm getting tired of hearing myself. Once he gets going he usually tries to finish if he can. But I seem to have lost my ability to cook anything that tastes good - even to me. I was a fairly good cook before, but now I've reached the end of my rope as far that goes. Now I make a lot of smoothies and salads for myself because he hates the smell of food cooking, so I'm eating more healthy. That's one good thing.

Being here helps me a lot, too - especially hearing from other caregivers like yourself.

Take care!

CajunEagle

oldvampswyfe said:

Its an interesting journey

Like you, I have symapthy problems...salt burns, sugar is way to sour, can't swallow my pills they get stuck in my throat.I cough and gag right along with him (they say its old age, but I shrug, I think its all symapthy pains)...what really is going on there, is beyond me.. lol.

I've learned to make ketchup, bbq sauce, mayo and many other common foods without sugar and they are really good, in fact better than the real deal from the store..lol..(patting self on the back)

I add real butter (not margarine) to everything, to make it slippery (even his coffee gets some).. we use unprocessed coconut oil (cold pressed) extra virgin olive oil.  If anything he is trying to gain weight, not loose, so its a different and difficult battle.  Not only is he having  problems with taste, swallowing, smell etc, but he doesn't like to eat, so mind you, he has never liked food.  He went from about 157 to 128, he is 6' 1/2", and very lean, wish I had that problem.  So getting is weight up and keeping it up requires about a 3500 to 4000 cal per day regime per day.  We did get him up to 154, then he started refusing food and went to 144..he is now, thankfully, up to between 152 and 154.

The forums here I think helped him realize, he isn't alone, its hard, a person needs to learn to put 100% of themselves into nutrition and calories, the mental and emotional well-being of yourself and the person you are taking care of, not to forget to mention all the hard work you can muster into this venture, to keep them sane as well as yourself. 

Thank you for your kind words and encouragment.  Hopefully others my gleam some encouragment from them also.

Its hard as you know...  You are definetly in the right place.

A stick-in-the-throat pill answer

 I'm 7 years out from treatment of the rads and chemo for the left tonsil thing, and swallowing challenges is just a way of my life.  Concentration and just plain paying attention when eating is my main solution.  I still take itty-bitty bites of most any form of food and sip water/tea/iced coffee with each and every bite.  At this point I'm not sure if it is just a habit, or I'm not willing to take the chance of going through a gagging fit.  I lost 74 pounds during treatment, but gained back 52 and have stayed at this weight level for the last 5 1/2 years.  Biggest challenge now is fighting osteoradionecrosis of the jaw bone, and going through Hyperbaric Oxygen treatment due to teeth deterioration caused by all that dang raditation.  BUT ANYWAY......I've found a product known as Pill Glide to help me get my pills down.  It's a little spray bottle with a grape or strawberry flavored lubricant that you pump on the pill/pills that you have placed in your mouth.  Swish it around on the pills, then with about and ounce of water (I turn my head to the left) and swallow.  I have to take 8 pills each morning (so far) for the duration, and Pill Glide works at least 90% of the time.......for me at least.

 

Larry

caffinated1

phrannie51 said:

It seems we all have to figure

out what we can eat, or can't....what's comfortable to eat, actually.  I'm a souper....that is, I eat a LOT of soup...but I soak thick pieces of crusty French or Italian bread in my soup so I have the texture from the crust, and the taste of the bread.  With chicken....dark meat will go down better than white meat (but have water handy, chicken is dangerous ).  Fish goes down pretty easily, also. 

Cook pork/chicken/beef in the crock pot with gravy....I can get meat down fairly well if I have gravy with it.  Forget the hambergers....I know, a cheeseburger deluxe used to be my favorite food....and I've tired, but dang.....their tough to eat, and crumbly meat like burger seems to get inhaled somehow.  I always end up in a coughing fit.

I don't know how far out of treatment you are....but if it's only been a short time (with this disease, short time equals anything under a year)....be patient.  I've been getting saliva back gradually (and taste) since I got done with treatment 3 1/2 years ago.

p

Yeah, crumbled meat like

Yeah, crumbled meat like burger and sausage is impossible without gravy. Any other meats I need a couple bottles of water and then only get a few bites because I'm bloated.

wmc

oldvamp said:

Thanks for all the tips

It's so great to have people like you that know where I'm coming from and are so willing to share their experience and knowledge.  I only wish I could have discovered this site back when I was in treatment because I know it would have helped me get through the really hard, bleak, seemingly hopeless times.

Thanks to my amazing wife and tireless dog (Sadie) I managed to get back to the job I love by 2 1/2 months out.  By 3 months, I was back to my usual three 12 hr. shifts.  I'm a 66 1/2 year old ER Tech who has no desire to retire and isn't about to let this darn disease do me in.  I'm 5 1/2 months out so far and I've managed to get my weight back to almost pre-cancer, but it's a constant challange.  I still have zero appetite and struggle to get enough calories in to give me the energy I require.  My BFF (wife) keeps on relentlessly experimenting with my high cal but low carb diet in an all-out campaign to eliminate this bugger from our lives - but it's extremely hard.

Admittedly, I have always been a sweetaholic, but knowing that sugars feed cancer cells is a dilemma.  When I found out that cancer cells can ONLY feed/thrive on glucose, I was devistated.  Beating this monster once was bad enough, but now it seems that keeping it from returning is going to be just as difficult.  One thing I have learned is that our modern diets have sugar (or carcenogenic artificial sweetners) in everything we consume, whether we want it there or not.  You just have to be aware of what you're chowing down on.

Phrannie, I hear ya loud and clear about coughing...it's become my second language.  I'm trying to teach my wife cough-speak, but so far, she isn't getting it.

Bill, you had some very wise words.  I can see how my acceptance of the "New Me" will help me heal.

Peace and love,

Michael

 

 

 

Yes, Sugar I have it daily.........

Yes the  glucose you get for the PET is grawing to the canced cells so they can see them better. However cancer likes an acid Ph and does not like the body to have the body Ph to be on the alkalide side. As for me, I have not cut down on anything. Yes I eat Chocolate, cake, pie, and still drink Pepsi. The way theg got my tumor it had not spread so they got it all. I still have that 25% chance it could come back. That is also 75% it wount. We all had cancer, but that alone, it the only thing we all shair. We had it bigger, smaller, in different locations, some had it go into the glands, and the list goes on and on. It is better to eat healthy and if you can eat more fruit and vegitables, and less meat, fish, and heaven forbid bacon. Now if you reward yourself with something sweet ever so often it should be fine. Do you eat any bread, potatoes, pasta? That is all starch and your body will turn that to sugar also. 

It can be, and is, hard to adjust to the "New" you. Change is slow, and you need some of your normal. My doctor, who was my ENT Head Surgeon and also the head doctor, told me to eat anything I want to or did before.  I also, might be wrong, but I believe it the glucose that is drawn to the cancer. Not the cancer going to the sugar. Just my thoughts, which won't even get you a cup of coffee. 

I'm 28 months out and have never had a PET scan or even a CT after my surgery. I know it is much different if they had radiation or chemo, which I never needed. Rember you are now part of this crazy family and never alone in this.

Bill