CSN Login
Members Online: 11

Taste buds...let us track when we all get them

Sam999
Posts: 307
Joined: Mar 2012

I am 3 weeks and have no sign of any taste yet. Anyone else has any tastte back?

Those who are done, could you share your exp with tastte? Is there any specific one that comes back? You simply keep trying to taste things everyday?

There are a few of us out from treatment, it would be great to write our expriences as we get them in this thread.

Thanks,
Sam

Sam999
Posts: 307
Joined: Mar 2012

I have read in other threads that fruits and veggie tastte comes first, if that is true we could write down which fruit and veggie so each one of us could give a try to that fruit/ veggie. I know everyone will be different but i am sure there will be some similarities.

It would be nice to hear from folks done for some time as well. Just tell us what you remember :)

Thanks,
Sam

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

Sam,
I am 4 weeks done tomorrow and I'd say last week I started noticing some taste. Some sweet, as in yogurt, is ok but syrup or the likes it very metallic and. I continue to try things every day to see what works and what doesn't. Good luck to you!
Billie

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

first rads (1998)- faint taste of vanilla at six weeks. Mostly back at one year. Completely nornal at four years.

second rads (2012)- mostly normal at three weeks post rads.

This is not a typo. whatever my other problems may be, food tstes great.

Pat

Sam999
Posts: 307
Joined: Mar 2012

Longtimesurvivor,

This is really interesting! For the same person things were different.

Does the taste come slowly or you it is similar to when we lost i.e. all comes fast. I lost all taste within 2 days.

Thanks,
Sam

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

and I can taste milk....but that is one thing I could taste whole time. Mouth sores got really bad after rads, so no opportunity to taste anything for the last 2 weeks.

LOL...I was thinking Sam....you're getting hungry....so am I! I walked into the grocery store today, and they were broasting chicken....OMG, I wanted some so bad....my husband is starting to complain because I sniff all his food...

Oh...just remembered this...right before the mouth sores my sister made me cheesy califlower soup....and I could taste califlower...it was tasty!

p

Sam999
Posts: 307
Joined: Mar 2012

Phrannie,
lol, yieah i am getting hungry and impatient! I truely did not expect such a rough road after rads were done. Last two days were good for a change, i know there will be step backs but i keep thinking, maybe this is it, maybe i did turn a corner. My mouth is sore too but i am reeady to try something small if i can taste it :) Looks like doc forgot to turn off the simmering option in our case. We both have more mouth sores than we did during actual trreatment:)

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

I'm 5 almost 6 weeks out and I have most of my taste back. Some things are a little off and I don't taste sweet as easily as everything else:)

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

out and I can taste lots of things but the taste
disapeares as I am eating. some tastes are stronger
than others. I am eating regular foods, fish, all
types of meat, chicken, potatoes, fries, veggies,
all with lots of graveys and sauces. I have to drink
milk or something as I have no saliva. After a while
when eating ( slowley and small bites) little blisters
appear in the mouth and they really hurt so I stop
eating and go make a shake. I think I'm overdoing
it and not letting it heal properly.

Everything will come back in due course, just takes time.

God bless
Tonsil dad,

Dan.

KTeacher
Posts: 949
Joined: Jan 2011

This is not something that I kept records of. I know that the Magic Mineral Broth had taste (yum). I know that milk, yogurt and cauliflower had taste. Chocolate took a long time the first time around and longer this time. We drove to Portland last week and I had snacks in the car, yuck--cardboard. Nature Valley Granola bars had no taste along with animal crackers, graham crackers don't have much flavor either. Some fresh fruit still burns my mouth. I am glad to be eating and have quite a variety, just alot that still doesn't work. Mashed potatoes with butter are good as well as baked but not fries. Fish is much easier to eat than chicken or beef. Always have a glass of milk or water to wash it down. Rebecca Katz recipe for Minestrone and Tuscany Bean soup had great flavor also.

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

I did not have chemo or radiation, robotic surgery and epiglottis removed, my taste was gone from the 2nd of November til around Christmas.....I tried some tomato juice and I could taste it, so I went to tomato soup, yum, nothing has ever tasted that good. next, I took a sip of Orange juice minus pulp and could taste it..the funny part is, I've never liked oj , but for about 4 weeks I drank it constantly, then one day, I just couldn't stand it again and haven't had it since. I'm almost 9 months out from my surgery and can taste about anything, unfortunately, I'm still on a soft food diet, because of the lack of an epiglottis and swallowing issues...you know what?, that's okay with me, I'm healthy , active and love life.... I can drink about anything and when you really think on it, you can have a large selection even on a soft diet.

Take care and give it 3-6 more weeks and I'll bet you'll be chowing :)

NeoTheron91
Posts: 76
Joined: Sep 2011

80% of my taste back after 6 months. So it will take a while to get all back.

cheers,
Neo

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Hi Sam,

Welcome to my world, where like you I live vicariously in the past where food tasted correctly. !7 weeks post and I identify with Phrannie on the milk but disagree with KTeacher on the Portland Granola Bars and have had no luck what so ever with my beloved mashed potatoes and butter (oh how I miss them). I’ve got bushes full of ripe Marion Berries in the back yard and 99% of them taste sour, yet corn on the cob has been a delightful success 3 times this summer. One minute ago I purposely tasted ¼ tea spoon of sugar and salt; good news the sugar is sweeter and the salt salter than 1 month ago with sugar measuring a 2 and salt measuring a 5 on the Matt Taste Scale.

It is like a pinball game with my taste buds, where I have elected to grudgingly drink my flavorful smoothies while attempting to keep trying real food. Sam, I want to play by your rules so are we reporting only successes or do we include failures too (which is a much longer list).

Salmon-no, pork ribs-no, ham-ok, coffee-ok, tea-ok, ice-cream-no, McFlurri-no, Blizzard – no, frozen fruit bars-ok, etc………..

Good Luck,

Matt

The more mature members of this website mention time.

KTeacher
Posts: 949
Joined: Jan 2011

Or older in age, or longer in the survival game? Marion Berries! are you in the Portland area? We go back again at the end of the month, new grandbaby on the way, my daughter's first and our first granddaughter. I would appreciate any prayers for her. She has wonderful medical care, but she is a high risk because of a blood clotting factor that she inherited from her biological parents. She will be induced on the evening of August 1st, her 23rd birthday. Grandma's birthday was August 2nd, we always celebrated together until a year ago when she passed away.

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

KTeacher,

Usually, I have been known too stuff myself with Marion Berries. You know, just standing there looking over the neighbor hood eating berry after berry. Not this year, I’ve tried, they taste sour to me. So, we are giving them away (of course you have to pass my scrutiny and be a real berry aficionado). Oh well, maybe next year or the frozen ones this winter.

Best,

Matt

Location - Mid Willamette Valley

Laralyn's picture
Laralyn
Posts: 453
Joined: Apr 2012

...because I wasn't allowed food by mouth when treatment ended. When I could eat pureed foods at around 5 weeks out, though, it felt like my taste was mostly intact. I'm almost at 7 weeks out now, and everything I've tried to eat so far tastes normal. There hasn't been a lot, though--pureed apricot, peaches, bananas, mashed potatoes, and a baby food with chicken apple compote (which tasted nasty but I think it genuinely WAS nasty).

On the other hand, my mouth is super dry and everything I eat burns my throat. At first, I thought it was just the fruits, but mashed potatoes burned too! I try to push through it to eat once a day though, to get my swallowing strengthened. When I was scoped, the doctor saw that my epiglottis is inflamed, which is why I have a few swallowing problems.

Hope your taste comes back soon!

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I lost most all my taste at 2 weeks into rads (I also lost 70lbs in treatment and I had a fedding tube placed in my BEFORE treatments began).

Now I am 6 months out and I believe I have 95% of my taste buds back. Sodas (Coke) and most fruits do NOT taste good to me. Acidic foods like oranges and tomato sauce still burn my tongue and throat and I do not like to eat them.

First taste I remember was about 3 mo post rads ...rice and pork gravy was REALLY good....my wife made the rice really moist and heaped pork gravy on top of it... very soft scrambed eggs with cheese were great and one of my first foods..and of course I would mix my ensure with 1% milk and drink that like there was no tomorrow.

My feeding tube came out just 6 weeks 'ish ago I think ...and I have now lost a total of 85lbs since my treatements began Nov 2011.

My throat is no doubt costricted..so I have to chew really well and take small bite (really different for me) ..

Oh..nearly forgot ..I LOVE salted peanuts..they don't burn my tongue (can't figure that one out) and I do have to chew and chew and chew them, then wash them down with milk...but I just loved salted peanuts!!!

Best,

Tim

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

Laralyn, my daughter loved that chicken, apple compote baby food! Not that a baby has very discriminating taste. Maybe you should give it another whirl!;) j/k!!

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Sam, for me, like others taste started back more in the few months range, no where close to three weeks.

I had more than enough to survive within a few months...

A lot of the lack of taste probably came from having to drink water with nearly each bite of food.

For a long time I would have a good first bite, then down hill from there and lose the taste rather quickly.

Sweet took nearly two years to come back consistantly.

Most meat (I'm a meat lover), took a ling time also as it would tend to be very dry...especially pork.

But that too has worked itself out.

But at over three years out, I have regained all taste with no exceptions... I can still eat very hot an spicy foods with no problem....ice cream, everything.

I'm sure you'll make continued improvements. Very few on here have limited taste abilities, though unfortunately some do.

Best,
John

Sam999
Posts: 307
Joined: Mar 2012

Looks like everyone's does come at random times. I am hoping mine come soon. Will definately post when i do taste something.

Good info as always,
Thanks,
Samh

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

that it seems to vary so much. My hubby has been 1 year post rad, had neck dissection and then the usual 37 rads. He has had spells where his taste seems to be coming back really well, and then it goes away just as fast as it came. He can enjoy the first few bites of almost anything now, but then it is flavorless. At least it doesn't taste bad anymore, so that is a plus. I don't know if he'll ever have "normal" taste return, though. I think it has a lot to do with the lack of saliva, but who am I besides just a concerned wife.

Sam999
Posts: 307
Joined: Mar 2012

Olybee,

Does the doc have anything to say on this? It seems at one year, most do have taste returned. I get worried when i hear a case like yours.

Hope things be normal soon for your DH.

Sam

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Olybee,

Concerned wife is what brought many of us this far. Don’t discount your efforts, we may not always say it, but the caregivers are the link to surviving this ordeal. Too bad there is no pay, you would all be rich ( I know it would cost a bundle to take care of me).

Best,

Matt

jwmde
Posts: 1
Joined: Jul 2012

It has been six years since my 35 radiation treatments that left me with no saliva glands. But all is not bad. I can eat many things even without saliva glands and can taste some.. not much but better than nothing.

The biggest problem was eating. What i found as a great help that allows me to eat almost anything except meat (steaks). In many cases, I can eat pork or chicken but only with the help of POI (yes hawaiian poi), which coats my mouth and throat and acts as substitute for saliva that coats my throat and allows me to swallow..

try it, it's amazing

jerry

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

My surgery involved the jaw but I did have rads and chemo. Water tasted salty from week 1 of Tx but was one of the 1st improvements after Tx. While I did not lose taste, some things burned so I could not eat them but I could still taste what they were.

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