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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.

CJ_the_Man
Posts: 1
Joined: Jan 2014

I underwent 7 weeks of radiation & chemo for tonsiler cancer metatasised to the lymph nodes which I finished ealy in September 2013.  The Dr's warned me that I would lose a lot of my sense of taste & that my syliva production would be greatly impaired.

What an understatement.  My sense of taste was not lost, I could taste everything, but it all tasted like a dog-s_hit version of it's former self.  At first I was told that I could expect to have 60% of my taste back after 30 days following completion of treatment, but that time span continued to get larger, & larger.  Now I realize by reading the testimonials on this site, that the reality is it may take a very long time to get a signifigant portion of my sense of taste back, & I might not get it back at all...

That's a very depressing thought.  I always have loved to eat, & now I don't even look forward to it.  It's more of a displeasant chore, & an emotional hardship.  I read one gentleman's comment about how he broke down crying one day, & really related to it, because aside from the physical hardships associated with radiation & cancer treatment, nobody really said much about the psycological & emotional toll, which I found to be as devastating as the physical consequences.  There have been several times during this ordeal that things hit a critical point, and I wept uncontrollably because of a deep sense of loss, hopelessness & despair.  I can honestly say that I almost wished that the therapy had not been sucessful, so that I wouldn't have to go on suffering as I have.  But alas, a couple of weeks ago the results from my post treatment P.E.T. revealed no detectable cancer.

It's three months now since the end of treatment, & things have hardly improved at all for the better.  The reality is, I may only be at the beginning stages of recovery.  I really wish the Dr.s had been more up front about what the realistic outcome of the side effects were.  I have a, "Hope for the best, but be prepared for the worse", philosophy, & I was given false hope which led to an even greater disappointment in the longrun, depression & deeper despair. 

The reality of my experience is that the cancer has taken away my life.  There's a bleak prospect that it may get better in the longrun, & I have suffered greatly over the last nine months since being diagnosed, and it 'ain't over yet!  There seems very little purpose in staying alive when your life have been stripped of potential, and every day is filled with physical & emotional pain & suffering.  I don't have a wife, children, or even a family, so there's no one emotionally or financially dependent on me for me to have a reason to survive.  So I've ended up survivng, but at such a great cost, & quite frankly, in the long run I don't think it will have been worth it.

I haven't had the advantage of being able to share much about my experience, because it seems that nobody really relates to what I'm saying, & are unable to understand jst how bad it is.  It's a lot worse than I ever could have expected it to be, that's for sure.

For those of you who have got their taste back signifigantly within a short period of time, & for those of you who have loving & supportive families, quite frankly, I'm envious.  I have no reason to hang in there, but I do anyway.  It seems unfair for others that have a reason to survive don't make it, when I'm the one who, "gets", to live on, but in torment.

2014-01-03

phrannie51's picture
phrannie51
Posts: 3984
Joined: Mar 2012

I wish you would have come here and started your own thread....this is where you start one:

http://csn.cancer.org/forum/164    You'll see right under HEAD AND NECK CANCER a little link that says: "Post new forum topic"...click that and start a new thread of your own, so everyone will go see it....this thread is nearly 10 years old.

Ah, but since you have me here, I want to tell you to not give up hope on the taste and saliva.....Gawd knows, I sure didn't have any saliva or taste at 3 months out, and I'm sorry your Dr. said you would (let's face it, NONE of our Drs.'s have ever been through treatment).  It's the rare members of this great forum who get taste back this quickly (some never even lost it...even rarer).....saliva does take time....more than 3 months, since it comes back just a little every month....you probably won't ever have it 100%, but good enough that you won't have to haul a bottle of water around every where.  Don't give up hope this early in the game.

I can relate with enjoying food as almost a pastime....that's where I was before I was diagnosed.....cheeseburgers deluxe and Mexican food were my favorites.....That was then, and this is now.....What I like to eat now isn't the same as before....(weird but healtier foods taste better these days.....like veggies).....don't get me wrong, I try icecream everyday, but still can't taste sweets....but I just look at it as a good thing, or I'd go overboard on it.  I also learned that "blander is better" when it comes to taste these days....too many spices and then I can only taste the spice.  If you want to give your taste buds an exercise, try a Chinese buffet (stay away from spicy hot things), but you can hop around your plate offering your tastebuds a surprise with every bite...wake'em up, shake'em up. 

Now you know you've been through a lot in the last few months.....and it can cause depression big time.....PLEASE tell you Dr. how you feel right now.....I think you might be surprised that having supportive families and husbands/wives isn't the answer to full out depression.  Tasting food and having saliva isn't the answer either......you might need to get on anti-depressants temporarily while your body puts itself back together.....please look into it, ok? Smile

p

If you start a new thread, just copy and paste what you wrote here, and put it there.....I want you to have the support of the whole board, and that's how to get it.  

Skiffin16's picture
Skiffin16
Posts: 8158
Joined: Sep 2009

First welcome, and you might want to post on a new thread as this one is quite old, or at least from the original post...

Now to the meat of it...

In reality at only a few months out, you are still really just getting over treatment and in the very early stages of recovery...

Will that take you to the place you want to be as for taste..., not sure. You really didn't mention anything else that I caught other than taste as for physical problems. But as you have read, it's going to take awhile..., that could be a few more months for enough changes to notice, or a year or so to make significant changes..., or somewhere in between. True a few have not made much progress, but many have..., and very very few at three months...

Now as for another observation, and I could be off base here....

Emotions and having your head wrapped around the diagnosis, treatment, recovery and longevity...

A lot of people here have had depression problems..., it's not uncommon and certainly nothing that can't be addressed given communication with doctors and medical professionals.

You might want to consider talking to a few to help with dealing with your situation and your thoughts and feelings you are going through...

Thoughts and prayers your way....

Everyone is significant here..., and in society. You have a story, and one that I'm sure can benefit others...

Best,

John

Ron Silver
Posts: 80
Joined: Apr 2013

Now it is like we are just waiting...waiting...waiting for it to come back.  Waiting for the cancer to come back.  Waiting for it to come back with a vengence.  Our future is destroyed.  Not an hour goes by without thinking about cancer.  Everytime we swallow, drink or attempt to eat.  We mourn who we were.  We are in a holding pattern waiting for the cancer to return and kill us, slowly and painfully. 

.

.

Or maybe not.

 

Unlike many, we are still here.  We can easily justify the above outlook, but we can also choose not to adopt it.  Some days it takes more effort than others.  

 

 

 

 

KB56's picture
KB56
Posts: 268
Joined: Apr 2013

CJ, I had exactly the same diagnosis and treatment that you did and I finished my treatment in mid June so about 3 months ahead of you.   Towards the end I was very depressed and I am a very positive upbeat guy.   I did have the support of my incredible family and a solid group of friends that had to pick me up at the end of the treatment and when I finished.   You're 3 months out of treatment and I know it seems like forever but it's really not that long considering what your body has been through.  my radiation oncologist used to say that they tore my body up really good and it takes a long time for the body to heal itself.   Mt throat hurt like hell for 5 months after I stopped radiation and for a time I didn't think I would ever feel good again.  I also had morning sickness ( a blood sugar thing that I eventually was able to control) EVERY morning after treatment for 4-5 months.   

i threw up every day of treatment due to a horrible gag reflex brought on by the radiation.   I had naseua patches and Zofran but it didn't really help as I still threw up every day.  i remember being so thirsty all the time, could only sip on water but it didn't help.   I got so depressed that my wife (a nurse) talked with the doctor and we all agreed that I would start taking an anti depressant fot a while.  It really seemed to help and I plan on taking it for a few more months as my body continues to heal.  The bottom line is that it will get better, hopefully much better than you are now.   Maybe not exactly back to where you were before this all started.   I lost my sense of taste as well and I remember the day I got my sweet taste back as I was at Chick-Fil-A and could taste the sweet tea.   It was huge.  Not everything taste exactly the same but a big step from where I was.  The saliva glands are back some but not near where I was before I started but I can live and enjoy food so I'm good.   I only had to shave one check because my neck and right cheek, full chin and above the lip were radiated so much there was no hair.   My neck was so burned that I looked like a reptile.  

I know everyone is different but most everyone here but I mention all the above because it should and will get much better from where you are today.   You're 3 months post treatment so you SHOULD and will feel better and it should start happening soon  but it is  a gradual process and hard to tell day from day but a noticeable difference week to week or more so month to month. 

talk to your doctor or oncologist about what you're feeling as you aren't the first on this site to have thoughts of dispair and wondering if you will ever feel good enough to resume living life to the fullest, damn close to how you did before all this crap hit, and I'm here to tell you that you will.   You will also come out of this with an appreciation of even the smallest things in life that you took for granted before as you can't help but go through this and come out different , even better, than when you started and I know in my part I am a more tolerant, understanding and appreciative person that I was.   

 

You our have fought a hard fight and have made it.   Talk to your doctor, friend or people on this site for support.    Don't give up the fight at this point as you have come too faR.

 

all the best,

Keith

granmudder's picture
granmudder
Posts: 39
Joined: Aug 2014

Hi There been reading these posts and hoping to find the answers I guess there are not any.. everybody is different..I work hard to try and keep him from giving up we are a strong unit but i must admit this is by far the biggest hurdle ever.. the dr told us it will get worse before it gets better.. my husband does get so angry though at times its hard to deal with . I do it because I love him and we need to get though this. We want our old life back.  I guess thats what everybody wants. He was misdiagnosed for over a year and I had to fight very hard to get them to believ there was something.. they diagnosed him with a brachial cleft cyst.. after a year and my pushing and threatening they did surgury thinking they were removing a cyst.. dr comes out and say I am so sorry I made a mistake... I get angry all over agin every time i think about it which is alaways.. off track here. sorry for ventng . I just want to know that someday my hubby grts back to being himself..someday..

debbiejeanne's picture
debbiejeanne
Posts: 2853
Joined: Jan 2010

cj, i felt EXACTLY like you for first 1.5 yrs after tx (surgery).  i had laryngeal cancer and had 35 rads then it came back and i had to have a laryngectomy.  u wanna talk differences, i now breath thru a hole in my neck and not my nose and mouth.  i also talk thru that hole (couldn't talk for first 1.5 yrs), i can't smell so that makes my taste very limited, i can't blow out a candle b/c i don't breath thru my mouth, i have a very deformed neck, can't lift my left arm all the way up (can't lift it to the shoulder) and i can no longer blow my nose (i have to dab it until it is dry, i cannot blow air out of my nose like i cannot blow air out of my mouth).  i have mocus all day, everyday and still have trouble eating due to rads.  my original dx was 8/2009.  my recurrence was 2/12.  i spent months in my bdrm and didnt' do anything.  that's how bad my depression was.  then one day i realized i was wasting my life.  there is a new norm for me and i need to accept that so i can have  some quality of life.  i am on anti depressants and the depression has gotten much, much better.  i no longer stay in my bdrm and since i can talk, i even spend time with friends.  life is good.  what i'm trying to say is, it will get better.  talk to your docs about anti depressants as they can really help.  give yourself some time to heal and discover the new "norm" for you.  you can get pretty close to who u used to be over time.  please don't give up, it will get better.  i still have days once in a while where i get a little down but then i remember, i'm lucky to be alive and pull out of that.  i will be praying for you.  you have found many friends here so continue to come.  we will be here to encourage, listen, talk, make you laugh, and anything else you need. stick around friend.

God bless you,

dj

phrannie51's picture
phrannie51
Posts: 3984
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: 108
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: 3244
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: 252
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: 108
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: 8158
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: 1400
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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