Question about taste changes

TRAD

My significant other/spousal equivalent (:-)) is in week 3 of 7 of radiation and has 1 of 3 chemo cycles under his belt for tonsil cancer, stage 4A. He has dry mouth but is tolerating it well with biotene and some xylitol mints and a spray, caphosol. He also has a very sore throat which he is using the caphosol for, just got Magic Mouthwash. He has a feeding tube biput we haven't started using it yet.

My question: what can we do about the taste changes? he loves peaches and thought they'd be good since they are soft and could slide down his throat easily but they tasted like dirt to him. any advice on what I can do for him or what he can do? though so far, I got him to say that vanilla, orange and mango still seem to be ok. But we need him to eat more than that.... any help is appreciated.

thanks,
Traci (& Steve)

5th grade boyfriend/girlfriend then re-united after 37 years and soul mates ever since

longtermsurvivor

welcome to the board
this is not the time to worry about the nuances of taste. Taste will only continue to fade away for the next few weeks, likely becoming absent after awhile, but the rotten taste of most foods will be a problem now, and again as taste buds begin to wake up. It may be a long time before things are reasonable again. What he needs is calories, and those are hard to come by if he has to pick and chose from foods that actually taste good, lol. Find a liquid source of calories now. Ensure or anything like it will do. Have him power down at least 2000 calories a day of the liquid stuff, and try whatever solid foods he can still tolerate without driving himself nuts. That will keep him out of nutritional imbalance, and continuiing to swallow is important to maintain the muscles responsible for swallowing.....

Pat

blackswampboy

welcome!
sounds like he's well prepared for dealing with issues, and your good care will also help greatly.
as for taste changes...not much you can do to stop the effects of rads. not to dwell on the negative, but it might get worse before it gets better. my experience, orange--and any fruit with acid--is rough on a nuked mouth/throat.
but you already have the solution in the feeding tube. no matter what goes on with his mouth/throat, he'll be able to maintain calories/nutrition/hydration with the tube. it takes some getting used to, but for many of us--it's a godsend.

best wishes to you both.

Mikemetz

The tube is your friend
Many of us debated about if and when to start getting our food through a PEG tube. The thought of having to manage the tube every day, and to think we have 'lost' something made many of us hesitant to give in to the reality of needing it. Speaking only for myself, it was a life saver and it didn't take too long to figure out that it would be the only way to get enough nutrition to give my body the strength it needed to make it through. As for the loss of taste, everyone gets back some part of their original tasting ability--it just takes time to learn what taste sensations will return and which foods might be off limits. Like Swampboy, I still can't eat spicy food or foods with high levels of acidity--like fruit that is not fully ripened.

Mike

phrannie51

Like everybody has said....
calories are what count now...eating for pleasure is out the window for a while, eating to survive is in the chute now. Longtermsurvior taught me that it takes a certain amount of swallows and a short amount of time to get down 8 oz's of Boost VHC...500+ calories in me with no fuss, no muss. THEN go about the business of seeing what might "taste good". I didn't find anything, frankly that I liked . Water was salty, anything with bread was dry, meat was a total failure...I lost all my taste by week three of rads...and lived totally on Boost VHC and water from July 3 till the middle of September, all delivered via my tube.

While he's still tasting tho, there are soft foods...mac and cheese worked for me...Shrimp Salad made with macaroni tasted good for a long time....Everything was a bit dry, but water will wash it down. I also could taste Cauliflower and Cheese soup for quite a while, it also "felt" good. There's a recipie for Magic Broth (link found in the Super Thread) that tasted wonderful and went down like velvet.

Once treatment is over, and he's thru the cooking time (about 2 to 3 weeks after the last rads) he can plan on trying to eat things again for more than just survival.

p

Skiffin16

Welcome Traci & Steve
Like mentioned, taste more than likely is going to continue to go to nearly nothing.

I was SCCIII Tonsils, 16 weeks of chemo, seven concurrent with rads.

I didn't have the PEG, but did still get in enough calories and hydration...Ensure Plus and Water.

I did have enough taste that the Strawberry Ensure was my preferred. I also (like you) like peaches, and the DelMonte Sliced Peaches in Light Syrup was always added to each of the several feedings each day.

Like you mention, they slide down easily, added a few more calories, and importantly in my thinking, they kept the throat muscles working.

I could taste the difference between the Light SYrup, and Un-Sweetened.

Taste like Pat mentioned, will fade away, but more than likely both taste and saliva will return.

A lor of us get all or nearly all of it back, no gurantees, but the majority seem to.

Check out the SuperThread, there is tons of useful information on that page...many contributions and links provided by many here.

SuperThread

Again, welcome...

John

CivilMatt

no taste coming up
Hi Traci & Steve,

Nice to hear from you and I am glad Steve sounds like he is doing well.

If he can still eat, do it, try anything that tastes ok. At a minimum keep drinking water and swallowing. It may be time to put the PEG into action. He can get a lot of calories quick and easy. The PEG is good for nutrition, hydration and medication.

I am extremely sorry about the taste buds, but they may be going on vacation for awhile. I was once at a place where ALL food “tasted bad” and “felt awful”. I could not believe I was ever a normal eating human I hated the texture so bad. I welcomed smoothies into my life with open arms and thought “this is it” smoothies forever.

Currently, through divine intervention, luck or something I have started to enjoy the feel and flavor of food again.

Hang in there; you are getting close to half way through.

Best,

Matt

Tonsil Dad

CivilMatt said:

no taste coming up
Hi Traci & Steve,

Nice to hear from you and I am glad Steve sounds like he is doing well.

If he can still eat, do it, try anything that tastes ok. At a minimum keep drinking water and swallowing. It may be time to put the PEG into action. He can get a lot of calories quick and easy. The PEG is good for nutrition, hydration and medication.

I am extremely sorry about the taste buds, but they may be going on vacation for awhile. I was once at a place where ALL food “tasted bad” and “felt awful”. I could not believe I was ever a normal eating human I hated the texture so bad. I welcomed smoothies into my life with open arms and thought “this is it” smoothies forever.

Currently, through divine intervention, luck or something I have started to enjoy the feel and flavor of food again.

Hang in there; you are getting close to half way through.

Best,

Matt

Don't worry.
Hi Tracy & Steve, welcome to our little piece of the internet
sorry you have to be here but its a great place to be. As Matt
says smoothies and high protien shakes were my lifesaver,
I didnt have a PEG because I was scared of loosing the ability
to swallow so I forced myself to drink and eat a little no matter how
bad it tasted ( and it did ). Magic Mouthwash didn't work for me
I used liquid hydrocodone to numb and take away the pain in the
throat while I ate or drank. It is all about survival to beat this beast
and you do what you have to do to beat it. During Rads your body
burns double your normal calorie intake so make sure you are
putting enough in and stay HYDRATED.
I am 7 months out of 33 Rads only ( no chemo or surgery ) and
I am pretty much back to normal ( whatever that was ) my taste and
saliva are still a little off but there coming back slowley ( very slow )
but I don't take any meds and feeling good
YOU WILL GET HERE TOO.

High Stage II Tonsil HPV+

God bless
Tonsil dad,

Dan.

TRAD

longtermsurvivor said:

welcome to the board
this is not the time to worry about the nuances of taste. Taste will only continue to fade away for the next few weeks, likely becoming absent after awhile, but the rotten taste of most foods will be a problem now, and again as taste buds begin to wake up. It may be a long time before things are reasonable again. What he needs is calories, and those are hard to come by if he has to pick and chose from foods that actually taste good, lol. Find a liquid source of calories now. Ensure or anything like it will do. Have him power down at least 2000 calories a day of the liquid stuff, and try whatever solid foods he can still tolerate without driving himself nuts. That will keep him out of nutritional imbalance, and continuiing to swallow is important to maintain the muscles responsible for swallowing.....

Pat

Thanks, Pat.
Traci

Thanks, Pat.

Traci

TRAD

blackswampboy said:

welcome!
sounds like he's well prepared for dealing with issues, and your good care will also help greatly.
as for taste changes...not much you can do to stop the effects of rads. not to dwell on the negative, but it might get worse before it gets better. my experience, orange--and any fruit with acid--is rough on a nuked mouth/throat.
but you already have the solution in the feeding tube. no matter what goes on with his mouth/throat, he'll be able to maintain calories/nutrition/hydration with the tube. it takes some getting used to, but for many of us--it's a godsend.

best wishes to you both.

Thank you for taking the
Thank you for taking the time to respond.

Traci

TRAD

Mikemetz said:

The tube is your friend
Many of us debated about if and when to start getting our food through a PEG tube. The thought of having to manage the tube every day, and to think we have 'lost' something made many of us hesitant to give in to the reality of needing it. Speaking only for myself, it was a life saver and it didn't take too long to figure out that it would be the only way to get enough nutrition to give my body the strength it needed to make it through. As for the loss of taste, everyone gets back some part of their original tasting ability--it just takes time to learn what taste sensations will return and which foods might be off limits. Like Swampboy, I still can't eat spicy food or foods with high levels of acidity--like fruit that is not fully ripened.

Mike

Thank you, Mike.
Traci

Thank you, Mike.

Traci

TRAD

phrannie51 said:

Like everybody has said....
calories are what count now...eating for pleasure is out the window for a while, eating to survive is in the chute now. Longtermsurvior taught me that it takes a certain amount of swallows and a short amount of time to get down 8 oz's of Boost VHC...500+ calories in me with no fuss, no muss. THEN go about the business of seeing what might "taste good". I didn't find anything, frankly that I liked . Water was salty, anything with bread was dry, meat was a total failure...I lost all my taste by week three of rads...and lived totally on Boost VHC and water from July 3 till the middle of September, all delivered via my tube.

While he's still tasting tho, there are soft foods...mac and cheese worked for me...Shrimp Salad made with macaroni tasted good for a long time....Everything was a bit dry, but water will wash it down. I also could taste Cauliflower and Cheese soup for quite a while, it also "felt" good. There's a recipie for Magic Broth (link found in the Super Thread) that tasted wonderful and went down like velvet.

Once treatment is over, and he's thru the cooking time (about 2 to 3 weeks after the last rads) he can plan on trying to eat things again for more than just survival.

p

Thank you so much. Taking
Thank you so much. Taking notes ...

Traci

TRAD

Skiffin16 said:

Welcome Traci & Steve
Like mentioned, taste more than likely is going to continue to go to nearly nothing.

I was SCCIII Tonsils, 16 weeks of chemo, seven concurrent with rads.

I didn't have the PEG, but did still get in enough calories and hydration...Ensure Plus and Water.

I did have enough taste that the Strawberry Ensure was my preferred. I also (like you) like peaches, and the DelMonte Sliced Peaches in Light Syrup was always added to each of the several feedings each day.

Like you mention, they slide down easily, added a few more calories, and importantly in my thinking, they kept the throat muscles working.

I could taste the difference between the Light SYrup, and Un-Sweetened.

Taste like Pat mentioned, will fade away, but more than likely both taste and saliva will return.

A lor of us get all or nearly all of it back, no gurantees, but the majority seem to.

Check out the SuperThread, there is tons of useful information on that page...many contributions and links provided by many here.

SuperThread

Again, welcome...

John

Thank you, John. Will check
Thank you, John. Will check out Super Thread!

Traci

TRAD

CivilMatt said:

no taste coming up
Hi Traci & Steve,

Nice to hear from you and I am glad Steve sounds like he is doing well.

If he can still eat, do it, try anything that tastes ok. At a minimum keep drinking water and swallowing. It may be time to put the PEG into action. He can get a lot of calories quick and easy. The PEG is good for nutrition, hydration and medication.

I am extremely sorry about the taste buds, but they may be going on vacation for awhile. I was once at a place where ALL food “tasted bad” and “felt awful”. I could not believe I was ever a normal eating human I hated the texture so bad. I welcomed smoothies into my life with open arms and thought “this is it” smoothies forever.

Currently, through divine intervention, luck or something I have started to enjoy the feel and flavor of food again.

Hang in there; you are getting close to half way through.

Best,

Matt

Thank you, CivilMatt ;-)
I
Thank you, CivilMatt ;-)

I know he is putting off using the PEG for as long as possible. He cared for his father for 2 years post-stroke which involved a G-tube and he knows what's involved (whereas I a, new to it) and I think that's why he's putting it off. Also probably the fear (?) of not swallowing anymore. Not sure.

I've made several shakes/smoothies that he hasn't touched and I've puréed some soups (veggie with chicken in chicken broth - totally liquified) that he hasn't touched yet. so far he's good with sweet potatoes, pasta, ice cream/sherbet, etc. He drinks Muscle Milk daily. I/we know calories are important but I can't buy any Ensure, Boost, etc as I don't like the preservatives and other artificial chemical crap in them. I've found some other, nutrient-rich hi protein powders and ready made shakes that are here and ready. Sometimes he has them but I think he's trying to swallow real food as long as possible even though acknowledging the PEG feelings are coming soon....

My heart is breaking.

Thank you, everyone.

Traci

luvofmylif

TRAD said:

Thank you, CivilMatt ;-)
I
Thank you, CivilMatt ;-)

I know he is putting off using the PEG for as long as possible. He cared for his father for 2 years post-stroke which involved a G-tube and he knows what's involved (whereas I a, new to it) and I think that's why he's putting it off. Also probably the fear (?) of not swallowing anymore. Not sure.

I've made several shakes/smoothies that he hasn't touched and I've puréed some soups (veggie with chicken in chicken broth - totally liquified) that he hasn't touched yet. so far he's good with sweet potatoes, pasta, ice cream/sherbet, etc. He drinks Muscle Milk daily. I/we know calories are important but I can't buy any Ensure, Boost, etc as I don't like the preservatives and other artificial chemical crap in them. I've found some other, nutrient-rich hi protein powders and ready made shakes that are here and ready. Sometimes he has them but I think he's trying to swallow real food as long as possible even though acknowledging the PEG feelings are coming soon....

My heart is breaking.

Thank you, everyone.

Traci

I know how hard this is
I know how hard this is because my husband is also going thru treatment currently. He doesn't have a feeding tube at this point but in the last week has lost about 10 lbs and we see drs today so who knows. But, I wanted to share a couple of things. Every morning I make his scrambled eggs with heavy cream and one slice of cheese which all in all equals about 500 calories( 2eggs and about 4 tbsp of cream..I know it's bad for the heart but need to maintain weight). These slide down pretty easily. I was making him dreamsicle shakes which had about 500calories. I used orange sherbert, heavy cream, a little OJ, and sprinkled in Carnation Instant Breakfast. It was packed with calories and he was able to get it down...I try to make sure there are as many calories possible in a small volume so he can get it all down.

Good luck to you and take it one day at a time. That's what I am trying, and I emphasize the word trying, to do.

Oh, we too were reunited.. we met originally when we were in our twenties, started dating about 7 years ago and have been married for 5 years. I have been blessed with the kindest sweetest husband anyone could ask for ...it only makes all this harder.

Joan

TRAD

Tonsil Dad said:

Don't worry.
Hi Tracy & Steve, welcome to our little piece of the internet
sorry you have to be here but its a great place to be. As Matt
says smoothies and high protien shakes were my lifesaver,
I didnt have a PEG because I was scared of loosing the ability
to swallow so I forced myself to drink and eat a little no matter how
bad it tasted ( and it did ). Magic Mouthwash didn't work for me
I used liquid hydrocodone to numb and take away the pain in the
throat while I ate or drank. It is all about survival to beat this beast
and you do what you have to do to beat it. During Rads your body
burns double your normal calorie intake so make sure you are
putting enough in and stay HYDRATED.
I am 7 months out of 33 Rads only ( no chemo or surgery ) and
I am pretty much back to normal ( whatever that was ) my taste and
saliva are still a little off but there coming back slowley ( very slow )
but I don't take any meds and feeling good
YOU WILL GET HERE TOO.

High Stage II Tonsil HPV+

God bless
Tonsil dad,

Dan.

Thank you, Dan. The Magic
Thank you, Dan. The Magic Mouthwash doesn't seem to be helping Steve either and he got the liquid hydrocodone yesterday.

Glad you are out of treatment and returning to "normal"!

Traci

TRAD

luvofmylif said:

I know how hard this is
I know how hard this is because my husband is also going thru treatment currently. He doesn't have a feeding tube at this point but in the last week has lost about 10 lbs and we see drs today so who knows. But, I wanted to share a couple of things. Every morning I make his scrambled eggs with heavy cream and one slice of cheese which all in all equals about 500 calories( 2eggs and about 4 tbsp of cream..I know it's bad for the heart but need to maintain weight). These slide down pretty easily. I was making him dreamsicle shakes which had about 500calories. I used orange sherbert, heavy cream, a little OJ, and sprinkled in Carnation Instant Breakfast. It was packed with calories and he was able to get it down...I try to make sure there are as many calories possible in a small volume so he can get it all down.

Good luck to you and take it one day at a time. That's what I am trying, and I emphasize the word trying, to do.

Oh, we too were reunited.. we met originally when we were in our twenties, started dating about 7 years ago and have been married for 5 years. I have been blessed with the kindest sweetest husband anyone could ask for ...it only makes all this harder.

Joan

Joan
Congratulations to you, Joan, on your reunion! I hear you - it does make all of this harder because Steve is the kindest, most thoughtful and caring man I have ever met. It's not fair and Cancer just plain sucks for anyone and I am floored every day by the amount of people being diagnosed year after year.

Thanks for the tip with the eggs. I've been using heavy cream in smoothies but hadn't thought of putting it in the eggs!

Steve's docs (we are in Annapolis - now a Johns Hopkins owned hospital) recommended him getting the tube early (actually before he began treatment but that didn't work out so he got it on Treatment Day 9 (we are counting them as the last one is 35). Anyway, docs didn't want him to have to interrupt his treatment for any reason so we got it in early and it is just waiting to be used....

I just discovered that he still likes the taste of orange and mango so I bought some Mango flavored protein shakes and some orange sherbert to make shakes/smoothies with.

Thank you, and I'll send you strength through cyberspace.

Traci

AJW1966

it's not easy
I'm at #16 rad with 14 more to go. Bad dry mouth but lemon hard candy(sugar free)helps. Hardly any taste left but i tried Glaceau Vitamin Water. No calories or sugar but decent amount of vitamins. I got the orange flavor and it was wonderful to me. I thought i was eating tangerines.
I also made an organic vegetable soup with carrots, celery, tomatoes, chicken broth, onion, garlic and seasonings and elbow macaroni. Cooked down soft enough. I could actually taste it! I downed a whole bowl!
If you have a natural market or wegmans, try the organic broths or premade soups. I found a creamy tomato soup that i can tolerate well.
I'm still experimenting so if i come across anything else that could be helpful, i'll post it.
Good luck, God Bless
Alan

meaganb

TRAD said:

Thank you, CivilMatt ;-)
I
Thank you, CivilMatt ;-)

I know he is putting off using the PEG for as long as possible. He cared for his father for 2 years post-stroke which involved a G-tube and he knows what's involved (whereas I a, new to it) and I think that's why he's putting it off. Also probably the fear (?) of not swallowing anymore. Not sure.

I've made several shakes/smoothies that he hasn't touched and I've puréed some soups (veggie with chicken in chicken broth - totally liquified) that he hasn't touched yet. so far he's good with sweet potatoes, pasta, ice cream/sherbet, etc. He drinks Muscle Milk daily. I/we know calories are important but I can't buy any Ensure, Boost, etc as I don't like the preservatives and other artificial chemical crap in them. I've found some other, nutrient-rich hi protein powders and ready made shakes that are here and ready. Sometimes he has them but I think he's trying to swallow real food as long as possible even though acknowledging the PEG feelings are coming soon....

My heart is breaking.

Thank you, everyone.

Traci

Hi Traci! I was really
Hi Traci! I was really worried about the preservatives and HFC in Ensure and Boost so I primarily drank Bolthouse smoothies during Rads. They are in the produce department ( refrigerated). They have some high protein varieties and they are a lot more natural. If you can make smoothies that is great, but if you are ever short on time then these are good to have on hand, plus the texture is really smooth and that was important to me once I got further into Rads.I hope your husband continues to do well!

TRAD

AJW1966 said:

it's not easy
I'm at #16 rad with 14 more to go. Bad dry mouth but lemon hard candy(sugar free)helps. Hardly any taste left but i tried Glaceau Vitamin Water. No calories or sugar but decent amount of vitamins. I got the orange flavor and it was wonderful to me. I thought i was eating tangerines.
I also made an organic vegetable soup with carrots, celery, tomatoes, chicken broth, onion, garlic and seasonings and elbow macaroni. Cooked down soft enough. I could actually taste it! I downed a whole bowl!
If you have a natural market or wegmans, try the organic broths or premade soups. I found a creamy tomato soup that i can tolerate well.
I'm still experimenting so if i come across anything else that could be helpful, i'll post it.
Good luck, God Bless
Alan

I can't imagine...
As a caregiver and not the patient, I cannot imagine what the patients are going through and I'm so sorry that anyone has to deal with such a horrible, horrible disease where the treatment nearly kills you in order to make you well.

We went to a movie yesterday, and he was suddenly bothered by everyone around us eating popcorn and how he couldn't. We came out and were both starving and he was tempted to eat in the food court in the mall but i reminded him that if we went home, he'd a) have something better to eat and b) he could swallow either the Magic Mouthwash or liquid hydrocodone first which would make it easier.

I made rice with shrimp and spinach and he was worried about how the spinach would taste and was surprisingly happy that it tasted good! I was relieved, of course, too. He used to eat salads and a ton of greens and has been drinking so many milk shakes, etc. (Muscle Milk has been his favored choice or some Bolthouse Farms that i buy).

Anyway, just thought I'd share that. Thank you.

Traci & Steve
(Tonsil cancer, Stage IVA, beginning week #4 tomorrow with another chemo treatment)

Steve1958

What gets me through..
Traci & Steve,

I also have tonsillar cancer, and am now starting my last week of 35 radiation treatments along with Erbitux (Cetuximab) once a week. I am receiving treatment at MD Anderson in Houston, and am here by myself (my wife and kids are in Orange County, California). I do not have a PEG, but they threatened that if I didn't eat 70 grams of protein a day and drink a ton of water that they would need to. So instead of calories, I focus on protein. I read the back of everything in the grocery store and have found a routine that works for me. I make myself 2 eggs each morning (6g protein each) and sometimes make a cheese omelette (1/4 cup cheese adds another 6g protein). I barely cook the eggs, as they only go down easy when soft. I take little tiny bites and just take my time. I also drink a bottled Starbucks Frappuccino (6g protein). In between or whenever I feel the urge, I eat the little cups of pudding (4g protein each - I like Kozy Shack). Interestingly, the one food I always like is macaroni and cheese, so I always keep some made and in the fridge. I can just nuke it whenever I need it, and 1 cup of mac & cheese has 10g protein. Beyond that, occasionally I find something else that I like - fettuccini Alfredo is still good. And if I van't find enough to fill up my 70g of protein, I drink a Bolthouse Farms 30g protein drink. Both Whole Foods and HEB stores have them in the refrigerated section here in Houston. To me, they have much better flavor than Ensure or Boost, but each person will have a different opinion. And my last filler if I'm in the mood is creme crème brûlée. I scrape off the sugar top and eat the rest. Creamy and good and full of protein. I also like ice cream, but I have to wait until it melts a bit, as the frozen stuff has no flavor against my tongue. I have found that most fruit burns now, so I stick to neutral flavors like vanilla and chocolate. And it's all doctor approved!

The key is to test things until you find what works for you, but there's got to be something that still appeals to you. And one more thing. Going through treatment, there is so much of the time that you're just not hungry, that when you do get an urge, go satisfy it immediately while the iron is hot. Desires leave as quickly as they come.

God bless you. You will get through this.

Regards,
Steve.