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Question about taste changes

TRAD
Posts: 27
Joined: Nov 2012

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's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

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

TRAD
Posts: 27
Joined: Nov 2012

Thanks, Pat.

Traci

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

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.

TRAD
Posts: 27
Joined: Nov 2012

Thank you for taking the time to respond.

Traci

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

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

TRAD
Posts: 27
Joined: Nov 2012

Thank you, Mike.

Traci

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

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

TRAD
Posts: 27
Joined: Nov 2012

Thank you so much. Taking notes ...

Traci

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

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

TRAD
Posts: 27
Joined: Nov 2012

Thank you, John. Will check out Super Thread!

Traci

CivilMatt's picture
CivilMatt
Posts: 3010
Joined: May 2012

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's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

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
Posts: 27
Joined: Nov 2012

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
Posts: 27
Joined: Nov 2012

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
Posts: 344
Joined: Sep 2012

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
Posts: 27
Joined: Nov 2012

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

meaganb's picture
meaganb
Posts: 233
Joined: May 2012

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!

AJW1966
Posts: 69
Joined: Nov 2012

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

TRAD
Posts: 27
Joined: Nov 2012

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's picture
Steve1958
Posts: 8
Joined: Oct 2012

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.

TRAD
Posts: 27
Joined: Nov 2012

That was very helpful, indeed. I'm sorry you are separated from your family during your treatment and I hope that has not been too difficult to manage. I know we all have to do what we have to do but still....

No one before you has quantified the protein intake, although I'm sure it's based on a patient's size/weight. Steve's not using his tube yet - he has it inserted the 1st week of treatment (doc's orders) so that when he needs it, and they assure us he will, it's there and there won't be any disruption in treatment. He goes for daily rad treatments (we are on week 4 of 7) and chemo is once a week every 3 weeks (Cisplatin).

He has been drinking Muscle Milk (he buys) and the Bolthouse (I buy). My mom bought him a bunch of high protein powders to make shakes from Whole Foods and I've bought some too.

He asked me to stop buying him foods/cooking as some of it goes to waste. I tried to hold back the tears but couldn't when i said - that's *ALL* I can do to help at this point.

Anyway, will try the shrimp/macaroni salad someone else suggested and will be sure to keep mac & cheese on hand (though that's not a problem with my 12 yo!).

Thanks and good wishes for your last week.

Traci

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

Through tx I carried a small bottle of swish and swallow and plastic spoon in a baggie in my purse at all times. I guess a man could carry some in a flask but I don't know how that would look in the food court at the mall:-)I found with mashed potatoes and mac & cheese consistency made a difference for me. Eggs and pancakes with lots of syrup seem to work for lots of us. And, if Steve is good with milk, it helps just about everything go down better. I managed rice krispies and milk throughout most of my tx. haven't had a bowl since. Glad to hear Steve is past the halfway mark on the rads.

TRAD
Posts: 27
Joined: Nov 2012

Thought I'd share this, too.... Steve wasn't getting enough greens since he's struggling to swallow. I found this at our local organic market and he likes the taste.

http://www.cogojuice.com/index.php/products/vegetable_juices/greens_goodness/

Just Greens

Get your five-a-day and then some with this sweet garden-in-a-bottle featuring snappy celery, succulent spinach, juicy cukes, and pinch of parsley. Sip it up and say, “Hey! Good for ME!”

ABOUT TWO LBS OF VEGGIES made this drink:
12 Stalks Celery
1 Whole Cucumber
1 Bunch Spinach
1 Mixed Bunch Kale, Mustard & Collards
1 Garnish Parsley

Traci

CivilMatt's picture
CivilMatt
Posts: 3010
Joined: May 2012

Traci,

At my worst, I could not stand to eat anything, the taste, no taste, awful texture was overwhelming. People kept giving me food to eat and I kept telling them I could not and would not eat, 99% of all food was disgusting. It is extremely hard for people outside of the H&N forum to understand the food dilemma. I moved on to smoothies exclusively for months and thought that was the “new me”, but it is now getting better. Food texture is now a welcome partner at the table and taste is at the front door. While it is getting better for me, but it might get much worse for him (temporarily).

Best,

Matt

I am 56 years old and met my wife in First Grade.

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

What grade are you in now, LOL....

JG

ac_scott
Posts: 9
Joined: Nov 2012

Had TX 11 of 35 this morning. Pancakes an sausage for b'fast, choco milk on the bus ride home, no problem with taste,..........until I walked in the office and made a cup of coffee, warm and wet is the only description I can give, had to double check and see if I actually put coffee and sugar in the cup. I thought the loss would be gradual, granted taste has slowly been decreasing, but to go all a once was a shock. It's really kind of cruel, they want us to keep our calorie count up, so we dream about consuming every fattening thing in reach. Then the taste goes away and we get no pleasure from the indulgences, just not fair. Oh well, the good thing to know is, Tx will be over eventually, taste will return, and life will return to normal.

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

I was diagnosed with a salivary gland cancer (MEC) two years ago at the age of 31. I had surgery and 30 rounds of radiation and I completed treatment about 2 years ago...seems like yesterday. some tastes and textures take a while to come back. I found that for me it helped to think of my tastebuds as being newborn. my old ones had all be kicked out and I now had brand new ones. I introduced foods like you would for an infant. a lot of variety, but in very small amounts. my foods were heavy in dairy as it was one of the first tastes that came back and didn't taste bad. i enjoyed alfredo sauce (minus the pepper) on very overcooked pasta. I still order my food with extra sauce to help me swallow it. some of the foods I liked before I don't like as much, but some that i hated I love! the hard part is being patient enough to know that the taste buds will come back and there is hope. I found that for the first two months chocolate tasted like cocoa powder. fruit tasted either dirty or just wrong. meat would have a very strong flavor. when I was ready for meat, I had to make a couple of changes. 1. I have to eat a fattier cut than I did before. 2. I have to cook it med rare, not med well. 3. I have to eat it as soon as it is cool enough to get down...if I wait too long it is too hard to get down. 4. i also seasoned my first steak with salt, onion powder, and garlic powder. no pepper. pepper was added to my food about three weeks after my sores were all healed up. I also liked the high protein boost. I still drink it on occasion when i need the calories.
I don't know if he likes coffee, but I found it to be very overpowering, so if i went out i would order my coffee (from starbucks) as a 130 degree single shot grande latte. that way it would be cool enough so I could drink it right away and not so strong that it bothered me. it helped me feel normal to be able to have a coffee from time to time.
best of luck! I hope his taste buds turn to normal quickly! huge hugs!
e

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

I almost forgot to mention that stouffer's swedish meatballs saved me. after about two months post treatment I ate them with a boost for at least one meal a day. they were the right texture, didn't taste too horrible, and because of the creamy sauce were okay going down. keep making food for him. it is what you can do and it is what makes you feel needed. just make something that can be frozen. he will have ups and downs...it is just part of the healing. just remember that if he had just finished surgery he would have 6-8 weeks of recovery from that. radiation is the same...6-8 weeks of healing just from the radiation and the resulting sores. then you have damaged taste buds. we live in a society in which every big social occasion involves food. we celebrate with it, we talk about it all the time, we talk about how much some one weighs, what fad diet people are on, what new "miracle" food will help you live longer. but then when you have H&N radiation treatments foods that used to taste amazing taste horrible. you lose that wonderful contented feeling that you had before when you would eat your favorite foods. it can be very depressing, but it doesn't have to be! this is just one more battle that you are fighting together! you both have a choice...you can let cancer win this or you can fight back. i am a fighter and I can tell you that I ate a lot of foods to find something that could get down and that didn't taste bad. if it tasted bad one day I would wait a couple of days and try again. I still remember on a day when I didn't want to eat anything. I didn't even want to drink water, my mom came by my bed and looked me in the eye and said to me, "you have a choice, you can fight and eat something or I will put you in the car and take you to the hospital and make them find a way to get you to eat. you have children to care for and you can't do that if you don't eat. so I am getting the keys or and I getting a glass of milk?" I drank that milk even though it had no taste. I drank every cup of milk she placed in front of me.
hugs to you. as the caregiver you have the roughest time of it. he had the cancer and the treatment, but you had to watch and there wasn't much you could do to help. hugs and best wishes!
e

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