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Taste Has Stalled Out

HobbsDoggy
Posts: 165
Joined: Feb 2013

Hi all,

Was really doing well in taste coming back.  100% solid foods and somewhere between 30% to maybe 40% at best of my ablity to taste came back.  Saliva is between 40% to 45% by my estimate.  I am 5 months from last radiation and chemo.  Unknown primary, full radiation and cisplatain (sp?) chemo.  All of a sudden about 2 to 3 weeks ago now that I look back on it my ability to taste stopped improving and now almost seems like it is slipping back a little.

Anyone else have this?  Still very much hoping for close to full taste recovery here.

Bob

 

 

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

Enjoy the things that do taste good, table the things that don't and check them again in a month or so. It probably took me a good year to get the majority of taste and saliva back.

It took me two years to get it all back..

I know..., I checked on Ice Cream every few weeks, LOL...

JG

boardwalkgirl
Posts: 261
Joined: Jun 2012

I am 8 months out, same treatment as you and I was also unknown primary. Same thing happened to me, I thought I was doing pretty well and my taste just disappeared. It was gone for about 3-4 weeks and then has slowly been coming back. I still can't taste much sweet. It just varies day to day. Don't give up, from everything I have read it is normal and it can take a while to come back.

Joanielo's picture
Joanielo
Posts: 43
Joined: Oct 2012

I really thought that my taste buds would be further along at this point of my recovery.  I am 100% on solid foods now but nothing tastes good.  At first, things tasted so bad that I could not eat anything.  Now, things taste good enough to eat but nothing is 100% normal tasting.  Most things taste bitter/sour.  I sure hope this continues to improve.  I worry that my taste buds will never be normal again.   Saliva improvement is very slow as well (hardly notice any improvement).  I am still losing weight but I was overweight to start with so am okay as far as my weight.  I hope that I am getting enough nutrion.  Thanks for listening and I really appreciate everything that you all post! Joanie

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Your post sounds like I might have written it !!! The only difference is that I have only found about three foods that even begin to taste normal. It's kind of like the movie "Ground Hog Day"around here . I know my nutricion is terrible but there is just not a lot I can get down. I too worry about never being to go back to my old eating habits . I have lost 80 pounds now and would be happy to stay at my new weight but I keep losing slowly now.  I sure don't want  to gain any back.I had my last Radiation treatment Oct. 26th 2012 and I thought on that day that I would be back to eating in a couple of weeks ! No one told me it might take a year or two!!! I didn't find this great bunch of people until after treatments. Well I didn't mean to write a novel so I will hush now and just be happy I'm still alive and able to eat something !

Peggy

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

Taste - it's overrated.  Three years out and mine seems to come and go.  Saliva went, and didn't come back, but you do learn to compensate. Certain fruits and vegetables taste better than they ever did before. Tried cherries again yesterday, and they were too sour to swallow. Fluffy cakes and muffins simply won't go down. Seafood is the most amazingly delicious treat, but I can't seem to force down dry chicken and over-cooked beef. It's all an adventure.  Never stop trying things. Every day is different.

Deb

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

 

Bob,

Been there no-taste that.

Face it; you are lucky (so to speak). I sucked down smoothies for 7 months.  Even though I tried every kind of food the taste, no taste, awful texture, terrible feel ruled the day.

Now at 14 months post I can eat everything again with ice-cream low man on the totem pole and sweet corn and steak riding high.  It just isn’t as big a thrill to eat as it once was (I can’t eat sweet corn and steak every meal).

As Sir Skiffin (master-of-all) says, tick-tock-tick-tock, only time heals all taste buds and saliva reservoirs.  I bet at 14 months post you will polish off a bucket of chicken by yourself.

Eat, drink and be hairy,

Matt

 

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

taste waxes and wanes....I keep thinking if I have to wait 2 years, so be it....some days it's better than others....and the best time for taste is when I first wake up (thinking that it's because it's the first time of the day I taste anything??)  Sweets are still a long way in my future....tho unlike John trying icecream every few weeks, I buy 1/2 gallon every single week Laughing and give it the college try.

p

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

LOL, if you are like I was, stop after one bite....

Not that I ever did that, but the first bite always tastes awesome, after that it was all down hilll, I couldn't taste another bit of it.

JG

corleone's picture
corleone
Posts: 145
Joined: Jul 2012

I am 5 month out of chemo and 8 after radiation treatment. I had constant (but slow) improvement until a month ago, when I had a (common) cold. That knocked down all my taste buds; it was like going back in time 4-5 months (back to mouth pain, loss of taste, no saliva, fatigue). One month after the cold I am back to the initial recovery curve. Saliva is somewhere 15-20% (just enough to allow me to sleep during night, without getting up every hour or so, like before). Taste is 80% back, but for sweet is still problematic, it fades away after 2 or 3 bites. Honestly, I don’t care much about that. I had a “sweet tooth” before the treatment, now is gone and I can’t complain. Actually that’s one positive thing, I can keep my weight normal (a bit underweight actually, but that doesn’t seem to bother anybody, including me). Fatigue is not a problem either (although in the evenings I have to stop the engines and also a 20 minutes  nap during day doesn’t hurt – the days when I work from home; when I travel it’s a different story). So all in all, I am doing great, I hope it will remain at least that way.

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

What I can eat still varies day to day. Once I get the first 2 or 3 bites of ice cream or a shake down, the rest is no problem. Chocolate is back and blue cheese is more off than on. Still have trouble with salad but keep trying because I miss it so much. Today is a good mouth day for me...hoping that happens more frequently now. Happy to say there is plenty that I can eat without too much burning or discomfort. Taste itself is not an issue for me. My go to food continues to be choclate chip pancakes at Dennys with extra syrup...3 visits in 1 week. Guess what I am trying to say is that I am still seeing changes and improvement at a year. It is a slow process. 

hlrowe
Posts: 23
Joined: Oct 2012

I have found my taste did not come back in a linear fashion. I too had mine stall out for weeks at a time and then small improvements here and there.  Not at all uncommon per my rad and med oncs.

I'm 11 months out from 35 rads (70 gy) in LT neck area. 6 cisplatin treatments.

Burger tastes like sawdust by itself but is fine in a MILD taco or spaghetti sauce. Pork is at 100%. Ice cream at 50% and fades fast. Chocolate candy is almost 100% and hardly fades now. Chicken is pretty bland on its own but fine in various sauces. Pop tastes horrible but I was never a big pop drinker. Salad and various dressings are at 100% I recently took a sip of beer and it too was horrible. Ice tea is great but the sweetness fades half way through. Acid based food still burns a little but fades in a few minutes.

Saliva ~40%

All in all I can't complain too much!

 

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

that I can taste longer than 5 or 6 bites!  I have avoided salad for months now after trying and trying to eat it with Blue Cheese dressing (my fave)...went the neighbor's the other day and had cucumbers with Hidden Valley Ranch....oooo yeah!  Also she had a boxed cereal with Blueberries and almonds in it....very yummy and the milk adds the extra "juice" to get it down. 

My main-stay food wise tho has been homemade veggie soup....it's like I've trained my mouth to taste it....I've eaten at least 10 pots of it in the last 3 months...LOL (hubby can't hardly look at it anymore).  Saliva is hard to judge because I can't remember what it was before.  I can lick my lips, and I sleep through the night, but have to hit the water jug immediately when I wake up.  Can't eat anything but soup without a jug of water at my elbow.  I keep on eating tho...summer is here, and I don't want  people to be tempted to kick sand in my face...ha! 

p

wmolivertx's picture
wmolivertx
Posts: 5
Joined: May 2013

Be patient, I am 13 years out and can't say exactly when the taste came back, but it did.  It was a slow transistion and came in bursts as time went along.  I do remember that for the first 6 months or so everything tasted like cardboard and about as chewable.

fishmanpa's picture
fishmanpa
Posts: 1103
Joined: Jan 2013

Hi Bob,

I was reading a thread on another H&N forum and the post rang a bell as this person had the same thing happen. His taste was Ok and getting better and then it started to slip.  The reason for this individuals problem was due to kidney issues which were affected by the treatment. Apparently, if your kidneys are struggling it can produce taste issues. 

What's your bloodwork been like lately? Are your creatinine levels good? Might be worth contacting your PCP and having a blood test done to see where you stand.

"T"

laurabeau
Posts: 25
Joined: Apr 2013

Well, it has been four months and foods still taste sweet or just plain bad to my husband. He relies on calories from ensure plus and I am grateful for that.  Looks from sll the posts that it will be a while before his taste rewillpower He will continue to try foods I wsure make sure of that! Lol  We will keep on keeping on!

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

LB,

I went to Red Robin this evening and had a “Royal Red Robin Hamburger” (it had an egg on it) with fries. It only took 2-glasses of ice-tea and 2-glasses of water and 5 napkins to accomplish.  It was more fun than a blender full of smoothies (and I loved my smoothies for 7 months).

Food taste better today than yesterday.

Matt

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