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Taste Buds - when will they return!?

Ramseur7
Posts: 5
Joined: Mar 2004

My husband just completed 6 weeks of radiation (42 treatments) for squamous cell carcinoma, base of tongue. He did well during treatment as he only lost 8 lbs., did not have a feeding tube and never took any narcotic pain medication. He is taking non-narcotic pain meds. His biggest problem is severe mucus, throat pain and no taste. He has an appetite and is so hungry. He is drinking boost plus shakes and broth. His throat hurts too bad to eat anything other than that for now, but if he could just TASTE he feels that his emotional state would be much better. I know it differs for everyone, but on average, can anyone share how long it took for them? My husband is getting a little depressed, but tries to keep his focus on God to help him through this. Any advice is greatly appeciated.

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

when I first finished treatment and started eating again.  Even tho my taste buds were pretty fried one thing that brought a lot of satisfaction eating was canned soups (of the vegitable variety....Ministrone, Veg. Beef, Chicken Veg.)....but I also bought French Bread that I'd slather in butter, and soak in the soup.  The crust (once soaked) adds nice texture to the soup, and also fills you up.  Since then, instead of French Bread, I've started using Cheeto's in my soup rather than crackers.....they also soak up into a nice texture, and add a little flavor (but not too much so that my buds are overwhelmed)....

Maybe give the French bread and soup, or Cheeto's and soup a try to get some satisfaction..... :)

p

Jeff2159's picture
Jeff2159
Posts: 59
Joined: Feb 2012

It will be one year at the end of the month when rads and chemo stopped for me and I hear your point about Drs. not going fully into detail as to what to expect, they beat around the bush. But really at the time of your first treatment were you in any mood to analyze and disect the treatment? Use this board to sound off as someone here has gone through your issues and more. Can I rub it in, I have full taste and saliva with less than half my tongue but on the other shoe my tongue is tied to the bottom of my mouth so I have to wear a retainer to speak and swallow and even that is limited. I must puree all my food, thicken water and yes I'm pissed off but I'm still making progress and that is what you have to look at. I was on feeding tube for 10 months and just got off in Sept. Physically I did not feel or look healthy until 6 months after the end of Jan. Think of progress in terms of months and not days otherwise it will drive you crazy. Yes I had high hopes of full recovery in 6 months. I have given that up but I still have hopes of at least being able to eat a sandwich someday.

good luck

Jeff 

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

CJ,

Sorry about the bad funk you have gotten into, that part of your brain is to be avoided if possible, if not possible there are people and or medications to help get past this (side effect).  Depression is just as real as dry mouth.

I did not fully grasp or understand when the rad onc said “you may lose your taste buds”, but I do now and so does virtually everyone here at the H&N forum. I did not really eat much food for 7 months  post, the feel and texture of most food was awful and I lived (happily) on smoothies.  I was constantly sampling foods with not much luck.  Then one day,  a switch got flipped and I was eating again.

No matter what any of us say, you are going to write your own story.  Chances are, given enough time you will be successful in your own way.

Matt

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

I am 13 months past my last treatment and still have issues with taste- I work with someone who had base of tongue and 16 lymph nodes removed and and is about 8 weeks post treatment and he has almost no side effects and can taste everything and says he has no side effects. It took me about 3 months before I was comfortable trying solid foods. Try starting with the basics- small pasta with butter and clear broth, double dipped soggy French toast loose scrambled eggs, maple instant oatmeal made with milk.green tea with honey. I think it depends on how intense the radiation was and what areas got radiated. My primary was unknown so I think I received a much wider area of radiation and why my side effects may be a bit more severe than someone who's primary is found. Once he stops spitting up all the crap in his throat and the sun poisoning goes away in his throat he will know when it's time - I still can't taste anything sweet and must never leave home without a bottle of water- whenever I do eat I still spit up thick saliver - sometimes you just have to adapt to a new normal.

Purplemountain
Posts: 104
Joined: Oct 2013

I had NPC and a little over a month out of treatment.  I have yet to have a follow up PET scan.  I have been able to eat for the last 3 weeks but there is no taste at all.  Suddenly today, my tongue can "sense" or taste sweet, sour, and salty.  It only occured on the intial feeding and lasted maybe a second.  Once I continue to eat, the taste is no longer "sensed" or there.  The cycle continues once I stop putting food in my mouth for a while.  Is that something normal going on?

 

PM

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

It's very common....

Myself and several included... I'd say it's the first signs of your taste returning..., how much, not sure...

I also would taste the first bite of food, then it was gone... Sometimes I could make it happen once or twice more with a sip (or several) of water.

But eventually, it came back 100%... Though in saying that..., sweet took nearly two years, or at least as far as ice cream... One bite, then gone...

Congrats, one step closer to being in the Abi-Normal Club...

John

donfoo's picture
donfoo
Posts: 1165
Joined: Dec 2012

this is the whackiest thread I have seen in the past year. Started in 2004 and revived several times. It must be close to setting a record for the thread with the longest life.

as to taste - everyone  is different. Luck blowing on my back had me back with taste 100% inside 6 months post. Only side effect remaining is my head sweats on less hot stuff than  before.

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