CSN Login
Members Online: 22

Question about taste

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

On a lighter note.

If I can’t taste, yet everything tastes bad. How do you describe what we are going through to others? I really don’t taste much, but what comes through the taste buds when eating a known item just isn’t there. I feel there must be a better answer then the standard ”I can’t taste”. I do taste, it is just all mixed up. Maybe I should say “I don’t know what I taste” or “My taste buds are all discombobulated”. I know this is silly, but I’ve tried to come up with a way to describe the taste bud scenario, and I got nothing.

In reality, I try to eat, and have been (slightly) successful with fruit, soups, corn-n-the-cob, granola bars and sweet tea made with Sweet’N Low. I am still drinking 3 smoothies a day, but I am willing to venture out.

Best,

Matt

sonyk728's picture
sonyk728
Posts: 102
Joined: Jun 2011

How's that Matt? Been there, done that last summer. You are able to taste a little, I was not at all. Absolutely awful not being able to taste things. Like eating cardboard for every meal and top of that, the mouth sores. I was careful to not say "I have no taste" because well that sounds like you have no taste in men, fashion, etc. Ha ha. I swear if you could come up with a pill people would take where they'd get no sense of taste, we would not have an obesity problem in this county. Hang in there. I lived on shakes last summer and it's been a beautiful summer here now and I can't go NEAR a shake or ice cream.

Best to you!

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

as daffy duck once said, "Rabbit au gratin de gelatin under tooled leather. Oh, drool, drool." sorry, a cancer survivor's fantasy.
that's a tough one, it really is.
I've been going with "chocolate pudding cups taste like library paste." and it did, I nearly gagged. can't taste any sweet in pudding, but the sugar in bottled green tea comes through. bizarre. have to check more carefully on the substances they are using to sweeten.

phrannie51's picture
phrannie51
Posts: 3617
Joined: Mar 2012

most people have enough imagination to realize some of what I'm saying....they don't remember very long, but I just say it again.

I'm really missing fruit....that's my favorite food all year, grapes, watermelson, oranges, apples, peaches, nectorines.....damn the list goes on....I wish I could find one thing that was yummy....and I'd eat it everyday....but nothing is yummy, just some things are more passable than others.

Everything however, smells wonderful!!

p

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

“I have no sense of taste“ is good, but I am tasting something I just don’t know how to describe it.

Sweet’N Low turned my sweet tea into a 7 on my scale (highest ranking since January), but remember Sweet’N Low is 300x sweeter than sugar.

Phrannie, my family doesn’t get it (Mom, Dad, brothers and sisters)

tomorrow = 19 weeks post

Paintslinger's picture
Paintslinger
Posts: 70
Joined: Jun 2012

Hey Guys,
About three to four weeks into my treatment (7 weeks of cis-platin and radiation of the throat)I lost ALL taste. I could quite literally taste NOTHING. As someone mentioned above, when I ate anything it was like putting wet cardboard in my mouth. I lived on "Rice Crispies" and New England clam chowder for a while because these were the only things that I could "almost" taste (if that makes any sense). I'm almost a year post treatment and I still can't taste anything sweet: completely gone. Oh well, I guess I'll get to keep my girlish figure. :)!

Ingrid K's picture
Ingrid K
Posts: 810
Joined: Mar 2011

Hi Matt,
you are DOING GREAT !! The fact that you are eating corn on the cob.... that is incredible at this stage in your recovery.
I used to just tell folks that my taste buds were fried during radiation and in the meantime most of everything tasted like _______ (fill in with whatever)

However, don't give up.... you will most likely see some improvements in your taste up to and even past the one year mark. For me it took just about all of 11 months till I felt like eating anything...it was so dissappointing to constantly run to the sink and "spit" stuff out that tasted like crapola so I actually stopped trying to eat real food and stuck with the feeding tube... but then one day the taste wasn't as bad as it was before. I kept trying soft stuff, but had the best luck with pancakes and syrup so that was my go to food.

P51 -- watermelon was the first fruit I could eat....and I think I enjoyed it so much because the juicy watermelon was like having saliva for a few minutes, LOL.

So keep up the good work !!

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I'm going to say close to what Sony said....

Here's what I said:

"Due to radiation treatments to the throat, I taste mostly two things, cardboard with salt and cardboard without salt "...LOL

Phrannie ...I have 90% of my taste buds back 6 months post rads...but for some reason most fruits kind of sting or burn my tongue and throat ..especially bananas or a cantaulope. Huh, go figure.

Best,

Tim

Sam999
Posts: 305
Joined: Mar 2012

It is vey hard for people to even imagine a no taste world! They dont know how that feels!

Pharannie, like you i miss the fruits the most and love them all so even one tasting good will help! Right now i am eating few pieces of water melon (taste like water with some water melon flavor), good ripe plum tasted not too bad. I cook pear and apple in microwave and puree them.

However, everything excpet dairy still stings. I still use lot of magic mouth wash and direct licodine gel as well. Even with this, something like banana is not eatable at all.

One of new thing i tried was pumpkin soup, my sister made it and i could taste it all. She basically boiled pumpkin in water and added salt and sugar and crushed it. I added some milk when i ate it.

Sam

tuffenuff's picture
tuffenuff
Posts: 273
Joined: May 2012

The worst part for me has been getting people to shut up when I tell them I can't force myself to eat because I have no sense of taste. They always insist on rattling off a list of things I should try. After the first 3 weeks I was so disgusted with the idea of putting food in my mouth I just wanted to say SHUT THE EFF UP!!! I will eat when this is all over!!!

I did try choc pudding again the other day because that was the last thing I could actually taste. It was like a mouth full of lard. Needless to say, I spit it out immediately. Which is really hard to do with a dry mouth lol! And for people who say its all in your head, imagine it tastes good and you can do it... HA!!!

That's my rant :o)

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Matt,

I lost my taste about week 3 of rads...meats, fruits which I loved were terrible, but creamy soups were good and I could still taste radishes and broccoli. I can remeber the first time I could taste peanut butter again, I screamed out loud and the dogs jumped...it was heave. Now today 7 months out from tx , red meats still ahve a funny flavor so I don't eat any, but everything else is coming back slowly. still some minimal saliva issues..but other than thatit's ok. My sister an niece are here visiting and we went for pizza wed evening, sis asked what I wanted for toppings and before I could even say anything she laughed and said your not getting thos #%#@%@# anchovies , cause even if you can't taste them we can...

Linda

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Basically, water tastes like sweat, and most everything else just tastes crappy....

That pretty much sums it up for me during my post Tx experiences...

Now after three plus years, everything tastes...gooooood, and my waist line proves that, LOL.

JG

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

I'm eating or trying to eat most foods that I ate before Rads, I can taste a little
but it goes away when I'm chewing. I can't realy eat breads or crackers
because I have no saliva but still eating none the less. I still supliment with
the 1000+ calorie shakes and my natural products.
The inside of my mouth feels weird, my gums, teeth and cheeks feel like
they are not mine......its a bit weird I know, but when I'm chewing it just
doesn't feel right.
Ah well give it time it will be ok.....I hope.

God bless
Tonsil dad,

Dan

boardwalkgirl
Posts: 261
Joined: Jun 2012

I find it amazing too how one thing just has no taste and another one tastes horrible. Today was my last radiation and I just wanted to eat something and for some reason dried beef gravy and biscuits was what I wanted, didn't know if I would be able to or not but I succeeded. One biscuit with gravy! It didn't taste like I thought it would but it didn't taste bad so I guess I will just keep trying things.

phrannie51's picture
phrannie51
Posts: 3617
Joined: Mar 2012

and found out that it tastes wonderful....just like coke!! I've tried Sprite, A & W Rootbeer, 7 UP, none of which tasted worth a damn....took a swig of Coke (which I never drank)...and it was so good, I drank the whole bottle :)

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Phrannie, coke was the only thing that tasted good to me too! And my speech therapist said that coke is what they tell patients to drink to help with the thick gunk too and also when water is too thin and we choke on it.
Billie

ditto1
Posts: 630
Joined: Mar 2012

your RADS today. Hope you rang the bell if they had one, I finish next Friday so thats when I feel the future starts as far as food. Matt just today on the way home from RADS I usually always stop and get a Wendy Frosty early in rads it would be a large and I looked forward to it, now I usually get a small and it taste like well nothing, Cardboard seems to be the best way to describe most things so I agree with the others. I am pretty much just on survival mode, Boost etc trying to exceed 1000 calories a day at the minumum. I know I need more but some days its all I can do to get that down. So I just tell folks it all sucks, I even stopped for a HC Punch at Sonic, such pretty red color, ice a plenty just looked so good, tasted it and nothing sweat maybe, hard to understand but it is what it is. I just pray before my last breath on this earth I can enjoy food again, never was to wise with what I ate, but Lord knows I miss it so much and I know most all of us on this journey want the same thing. So as I finish Boost number 2 I will just keep on keepig on for now.

Sam999
Posts: 305
Joined: Mar 2012

Phrannie,

Did you actually drink the coke? It did not sting? Which one did you try diet or regular? I am dying to have a cup of soda.

Sam

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

For me the coke was very fizzy but didn't burn. I drank regular because that's what I would have chosen before rads anyway and let's face it, we need all the calories we can get!!! Good luck
Billie

fisrpotpe's picture
fisrpotpe
Posts: 1320
Joined: Aug 2010

my taste's are gone, i feel like most of my senses like smell have helped a bunch. as long as it smells good, there are no hot spices along with some texture make it work for me. I call it "Make it Work"

john

boardwalkgirl
Posts: 261
Joined: Jun 2012

I actually was hungry again last evening so I had to try. I had some packaged stroganoff flavored noodles(10 minutes to fix) and my husband had cooked some smoked sausage grillers for himself so I think why not??? I ate a whole griller, cut up in little pieces dipped in Tastefully simple mustard. I didn't get alot of taste other than the mustard but it didn't taste bad. I keep thinking I don't want to over do it but if it goes down ok, the sooner I can get rid of the feeding tube, right? I am only 15 lbs down from the beginning almost 9 weeks ago so I think that is pretty good. And actually I weighed more at that point than I ever had as I was eating everything I could think of while I could taste it. Now what to try today.....

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

getting adventurous, just tried eggies for the first time again.
more like the memory of egg taste than real taste. but got two eggs down!
and last night the kid brought me a sesame ball filled with sweet red bean from dim sum. some real taste! sweet works better than other tastes.

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

Fellow noneaters and former noneaters,

I agree with, “everything did tastes like cardboard”, for the most part; so much so that I find myself satisfied with my smoothies (which I am not). Now if I could eat one of everything mentioned here I would be a happy guy and wash it all down with a coke.

Had watermelon today and I could faintly taste sweet. Going to have some more in a little bit. Now that I know about the Sweet’N Low tea, I am drinking it again. The tea almost tastes normal.

John is correct it takes time (and luck). I added the luck part.

Thanks everyone,

Matt

mls351w
Posts: 88
Joined: Jul 2011

I remember(6 years ago) that I had no taste period. But, I had no bad tastes either.
Everything eventually was tube fed, so I wasn't concerned. Very soon after treatment, 2 weeks I recall, I had my tube removed and was eating normally. I could taste the first two or three bites, and then all taste was gone. This gradually improved to normal status and my taste was back. No, my taste was better than before. Now I don't need to salt anything(well except for french-fries of course). Potato chips are too salty to eat and the least amount of mustard is too much. Was kinda hoping I'd loose my taste for some bad things and find a new taste for the good things. Didn't happen. Double cheeseburgers with chili and jalopenos never tasted this good before.
Just letting you know that all things are possible and chances are your taste will recover. I tend to be on the positive side and assume that all afflicted will have the same recovery I was blessed with.

Mark S.

katenorwood
Posts: 1808
Joined: May 2012

Matt,
I didn't go through everything that most of you folks have. But due to nerve damage and rotten rad damage I have major issues with taste. Before my surgery I guess some tastes were already effected. I can taste salt and pepper burns my tongue terrible. I have gone to Greek yogurt (mostly for the texture) and it has some taste ? Issues with dentures have been a bad trip too. Keep trying everything that appeals to you. And don't try to explain this to others. Tomato tamoto....to each his/her own right ? Warmest regards sent, Katie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm starting to get many of my tastes back but that being said, something's still have no taste what so ever. It reminds me of when I was a kid and would chew on paper in class. I know..... sounds weird but we all did it in this one class I had. Anyhow, I just kept trying things over and over and eventually I started being able to taste it. Even if it's only a hint.
Good luck to you and I give up trying to explain to people why I can't taste and how dry my mouth is. If You find the magic answer please do let us know.
Billie

yensid683
Posts: 224
Joined: Apr 2012

My sense of taste went away after about three weeks of rads as well. I noticed a gradual change and found that some of my favorite things started to taste odd, but in retrospect it was because they no longer had a taste and it was all just the mouth feel of what I was eating.

I did find a way to explain it to people. I would ask them if they had ever picked up the wrong drink. For example, did you ever pick up a glass of what you thought was milk and it turned out the you picked up someone's lemonade? Either taste is just fine, but when you are expecting the smooth creamy taste of milk and you get the tart and sweet taste of lemonade, you are absolutely disgusted with the change in expected taste. That is what it was like for me, nothing tasted like it was supposed to and as a result it was like trying to eat cold mashed potatoes, gagging.

I am fortunate that my taste buds, just 3 weeks after rads started to wake up. I use the salt and baking soda rinse and it previously had no taste, but just a short time ago I was able to detect the salt. I've had steady improvement and have gotten back some sweet and a heck of a lot of sour. I had a fresh cherry the other day that my wife said was 'quite tart'. Holy crap was it 'tart'!

I was grateful that I could actually taste it!

Now if I would just start regenerating some saliva and I won't have to swallow what I eat as though it were a pill being chased down with water!

Hang in there, it will get better.

Peter

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network