Taste still not returning

MissBlueEyes4Life

Whats the deal? Last chemo was first week of August. Last radiation was middle of July.  Here we are at December and I still cannot taste 99% of foods. I don't understand, I didn't have tongue cancer, they didnt zap my tongue directly or any of my mouth, just my nose area forehead and neck. 

Any ideas why it's not returning? Could the no saliva be a part of it? Sucks to be around the holidays and not enjoy any of the food. Feels like a terrible punishment, I don't enjoy going out to restaurants with family at all. It just makes me sad.

JBBW

tasteful comment

Everyone responds differently to the treatments.  My last radiation was just before mid August and last chemo was middle of July.  I am slowly getting my sense of taste back.  When I first started tasting salty foods again in the middle of September (+1 month) I thought I would have a significant amount of taste back by Thanksgiving.  Nope.  Salty, Sweet, tiny feelings of sour, but nothing else.  Well, except that I have never felt spicy foods this much before.  Spiciness is nothing but stinging - no actual taste. 
I guess the "deal" is that we exchange our sense of taste for the chance to live without cancer.  But yeah, around the holidays it stinks extra bad.

If you still have a sense of smell, that will help.  I lost mine years ago.  It's not as tramatic as loosing taste but every once in awhile i get a wiff of something that is otherwise tasteless.  It really seems to make a difference to me.

Good Luck.  I hope you get some sense of taste back in time for Feburary candies!

MissBlueEyes4Life

JBBW said:

tasteful comment

Everyone responds differently to the treatments.  My last radiation was just before mid August and last chemo was middle of July.  I am slowly getting my sense of taste back.  When I first started tasting salty foods again in the middle of September (+1 month) I thought I would have a significant amount of taste back by Thanksgiving.  Nope.  Salty, Sweet, tiny feelings of sour, but nothing else.  Well, except that I have never felt spicy foods this much before.  Spiciness is nothing but stinging - no actual taste. 
I guess the "deal" is that we exchange our sense of taste for the chance to live without cancer.  But yeah, around the holidays it stinks extra bad.

If you still have a sense of smell, that will help.  I lost mine years ago.  It's not as tramatic as loosing taste but every once in awhile i get a wiff of something that is otherwise tasteless.  It really seems to make a difference to me.

Good Luck.  I hope you get some sense of taste back in time for Feburary candies!

Thanks for the response, yeah

Thanks for the response, yeah I guess it does differ from person to person. The type of cancer I had they had to remove my olfactory nerve (the nerve that gives you sense of smell) so I can no longer smell anymore. I know this did affect my taste after surgery. Some things tasted the same other's were different. At least I got a preview of what's to come. But I'd rather deal with that instead of having cancer 

Andy13460

Taste

Ithink loss of saliva plays a big part but your tongue would have received radiation. I had base of tongue and so the front of my tongue has come back ok, about the same time line as you maybe i have 4 weeks on you. I can remember when it went it's not nice no amount of reading prepares you for it. I for some reason am not typical 22weeks out and the only side effect is a slight loss of hearing.

bebo12249

I took about as much time to

I took about as much time to regain taste... and when it comes back, it will in baby steps. Time will deliver...

Sinus2016

It does get better slowly but not completely

i get the frustration, the lack of saliva, loss of smell and chewing without satisfaction. Remember your not alone.  

it’s been just over a year since my last treatment and while I can’t go anywhere without my water bottle I have been able to endure a little spicier food, catsup doesn’t burn my tongue anymore, chocolate not as sweet.  I recognize it will never be the same but I found watching my grand children eating deliciously or getting confirmation from my kids that the food I prepare taste good helps me focus my meals on them and not my taste buds.

I hope you find satisfaction with the life around you and learning patience will present it rewards; just maybe not quickly as we would like.

:>)

CivilMatt

I am hoping for all the way back.

DMBE4L,

Yes I do have an idea, at least if you follow a similar food and eating path which I took.  According to my timeline, you should not begin “true” new normal eating and tasting until (August + 7 months) the first week of March.  AND that first week of March will be great.

Time is the holdout card, it is different for all of us.  I did have some good (taste) surprises all along the way.  The only way to know if you have any yummy treats just waiting is to try a taste of everything.  No kidding, this is a life challenge and if you are fortunate as many of us, you will be successful in your journey back to the land of eaten (Matt humor).

I don’t think you are being punished; you already were with the cancer.  Now, it is just a test of your character.  I happily drank a ton of smoothies, but was even happier to retire the blender when it came time. 

My wife and I and my boss and I shared many lunches where I was drinking mine and they were enjoying a burger, that is now years behind me and it just was a time that was.

I really hope the best for you.

Matt

OKCnative

Everyone is so different. I

Everyone is so different. I had base of tongue stage 3 and I never lost my ability to taste. 10 weeks post treatment and I can eat anything I want and I can taste it all. The only weird taste I'm experiencing is that soft drinks taste terrible to me know (which is probably a really good thing since I use to drink two 40oz soft drinks a day).

That said, I know several people now that did loose the ability to taste and all but one eventualy regained it within a year. But. it took many months and lots of eating things that simply did not taste good to them. 

Dinosaur Sr

CivilMatt said:

I am hoping for all the way back.

DMBE4L,

Yes I do have an idea, at least if you follow a similar food and eating path which I took.  According to my timeline, you should not begin “true” new normal eating and tasting until (August + 7 months) the first week of March.  AND that first week of March will be great.

Time is the holdout card, it is different for all of us.  I did have some good (taste) surprises all along the way.  The only way to know if you have any yummy treats just waiting is to try a taste of everything.  No kidding, this is a life challenge and if you are fortunate as many of us, you will be successful in your journey back to the land of eaten (Matt humor).

I don’t think you are being punished; you already were with the cancer.  Now, it is just a test of your character.  I happily drank a ton of smoothies, but was even happier to retire the blender when it came time. 

My wife and I and my boss and I shared many lunches where I was drinking mine and they were enjoying a burger, that is now years behind me and it just was a time that was.

I really hope the best for you.

Matt

Taste and Food Pleasure

Hi Matt, It has been 2 and half weeks since radiation on neck ended. I had one big chemo blast. I had 2 surgeries to remove the source of the cancer (back of tongue) and a third to remove the neck tumor and 30+ lymph nodes.

I've been going through this since late July 2017. The side effects from the radiation are working me. Thick saliva, dry mouth, no appetite, warped taste buds and lack of energy are on me everyday. I want to eat again. I want to eat as a normal person would. I am guessing I am in for a long haul before this ever happens again. Any thoughts on timetable to normal?

OKCnative

Dinosaur Sr said:

Taste and Food Pleasure

Hi Matt, It has been 2 and half weeks since radiation on neck ended. I had one big chemo blast. I had 2 surgeries to remove the source of the cancer (back of tongue) and a third to remove the neck tumor and 30+ lymph nodes.

I've been going through this since late July 2017. The side effects from the radiation are working me. Thick saliva, dry mouth, no appetite, warped taste buds and lack of energy are on me everyday. I want to eat again. I want to eat as a normal person would. I am guessing I am in for a long haul before this ever happens again. Any thoughts on timetable to normal?

2.5 weeks post radiation is

2.5 weeks post radiation is still very early. In fact, you're not even beginning to heal yet - as the radiation and chemo are still doing their thing for up to 3 months post treatment.

I had many of your symptoms at 2.5 weeks post; really bad saliva (thick phlegm [flem] actually), lessened saliva, loss of appetite, I was still on a liquid only diet, I'd often feel sick in the evenings and fatigue was constant.

At week 5-6 things suddenly changed. The phlegm stopped, my appetite came back and I could actually eat most anything moist/soft.

By weeks 8-10 I was eating any and everything (taste is fine for 99% of foods), no longer feeling sick and fatigue was only occasional.

Everyone's timetable is different. What I liked was the fact that most of my symptoms would just end suddenly. So, I never knew what tomorrow would bring and it always gave me hope.

Hang in there and keep a positive attitude. I credit that for most of my good fortune through treatment.

Curlyn

I read somewhere that if the

I read somewhere that if the olfactory nerve ( smell) is affected some people have their taste affected rather than smell. Or both. Nerves take a long time to heal. But I see that your olfactory nerve was ?partially sacrificed so it is still early days. Your surgeon might be able to answer this best as he/she knows exactly what they did.

Dolphinswae

Oncologist dentist tip..

When I went to see my onco dentist he told me to gently brutish tongue thirty times and to do it three times per day. It has helped but I'm a slow healer and two and a half months out, starting to taste but still need a way to go. I also have severe nose congestion which affects ability to taste. 

Dean54

I feel the same about the holidays

I'm only 4 weeks out and feel great, doing practically anything I want execpt eating. No taste but I can smell and things appeal to me but if I try to eat it just doesn't happen. Feels terrible in my mouth.

All we can do is hope that it does come back some day and hope for the best.

wild willy

taste

i;ve had no taste for 7 yrs . had some taste for almost first year and then it went away. cancer is hell aint it.

AndrewP16nose

Different for all of us

It's interesting to see the variation in what treatment has done to our taste and smell. I had absolutely no taste or smell for 8 months after radio and chemo and then it has slowly improved. However still nowhere near what it used to be. Spicy foods are intolerably hot/spicy even if my kids say I'm being a baby about how spicy the dishes are. I still have only about 80% of my saliva- this took over 2 years to slowly come back. This frustration is something we share and not being able to taste/smell and the lack of saliva is tough from a quality of life point of view.

FernandoM

First Post

Almost 7 weeks out from the end of treatment (squamous cell carcinoma of head and neck—right tonsil). Have not been able to eat yet. Drinking smoothies and juices like crazy. Sense of smell is fine. Have dropped 46 lbs since August. Luckily, I had it to lose. Everyone tells me it’s a matter of time before I eat. I’ve tried some soup, oatmeal, yogurt—all terrible. I know I’m going to have to force myself to eat very soon no matter how it goes down. I want to go for a run, take a hike, or get back into the gym. But I know I’m not taking in enough calories. I’ve kept my feeding tube in, haven’t used it in a couple of weeks—but I might have to start again, which sucks. You are all in my prayers. Thanks for your posts.

Troyburkle

Some things that have been helping me post rad

I had surgery to remove tumor on my tongue SCC stage 3 ,4cm tumor on right side of my tongue.(Aug 1,2017)They threw in a surprise radical neck dissection and took 30 lymph nodes. 5 days in the hospital, feeding tube,4 drain tubes in my neck,the whole deal. I am 50 and was very healthy 6'5 245 lbs and never really been sick,have never had to be in the hospital, just a day surgery and the normal accident visits to the ER lol.

I had to do the 30 round radiation, chemo not recommended. Finished up on Dec 1,2017. All through Nov and right over Thanksgiving, so I know what everyone means when they say the holidays are tough when you cannot taste or even eat, its a real test to the human psyche. They told me the week after rad was going to be tough and let me tell you,that was an understatement.

The concentrated on my tongue and neck basically along my neck line where the dissection scar is. I was eating pretty decent all the way through the radiation and drinking Boost Very Hi Calorie (540 ea serving!) A week post rad no food intake, losing weight, on Gabopentin and Dex, Dalaudid liquid and getting depressed. So yes, I know what yall are going through and I want to help any way I can.

For taste.My dentist said the best gift I can give you, is to get on Amazon and order Zinc Sulfate and take it three times a day. It worked for me,I took it religously and can taste just about everything after having my tongue blasted for 30 rounds. It is still healing, still scabbed up a bit underneath, but taste is here and the Drs cannot believe it, they actually think I am stretching the truth. Get the Boost and the premier protien shakes you can mix them together 3xs a day and they will help maintain weight keeps some energy up too.

Yall have to understand that this cancer treatment and the surgeries etc does not just affect your body,outward appearance, ability to eat and taste, but your emotionally exhausted too and have to give that proper consideration as well. The Holiday timing sucks too, really bad.

Time has to pass. It seems to me like time is crawling by waiting to heal. I was very healthy, quick healer, bounce back from anything ready to rock and roll always. Not anymore, this is a slow process to let your mind and body heal from. Yes it is frustrating. And you will hear a million times "well everyone is different" and thats certainly true. But in my opinion you have to buck up and power through it, get tougher than you have ever been, dig deep! Use all your resources especially the people and your support around you. Think about how lucky you are. Positive thoughts. Power down that smoothie even if you are sick and tired of it, your body needs it. Food is better medicine than what you are getting from the pharmacy. Ok this is getting long but I want to help because I know what its like. I lost my Father to kidney cancer and a best friend to pancreatic,I am familiar with this ride. If this helps one person it was worth my 2 cents!

christine2080

Thank you

TroyBurkle, Recovery during the holidays is so tough. My husband finished 35 rounds of radiation & 6 Cetuximab on November 21- the Tuesday before Thanksgiving. You’re so right about powering through this. He has started eating food and I know he can’t taste but 20% of what he eats, but he’s trying everything. Thanks for reminding me about zinc- I’ve got to get my husband some tomorrow. Thanks for the pep talk and words of encouragement!

Troyburkle

christine2080 said:

Thank you

TroyBurkle, Recovery during the holidays is so tough. My husband finished 35 rounds of radiation & 6 Cetuximab on November 21- the Tuesday before Thanksgiving. You’re so right about powering through this. He has started eating food and I know he can’t taste but 20% of what he eats, but he’s trying everything. Thanks for reminding me about zinc- I’ve got to get my husband some tomorrow. Thanks for the pep talk and words of encouragement!

Your welcome!

No problem.Just remember to make sure it is Zinc Sulfate otherwise it wont do the same thing. I couldnt find it at Whole Foods or Sprouts I had to get it on Amazon.

MissBlueEyes4Life

Curlyn said:

I read somewhere that if the

I read somewhere that if the olfactory nerve ( smell) is affected some people have their taste affected rather than smell. Or both. Nerves take a long time to heal. But I see that your olfactory nerve was ?partially sacrificed so it is still early days. Your surgeon might be able to answer this best as he/she knows exactly what they did.

They completely removed my

They completely removed my olfactory nerve so I can no longer smell. I do know that after that surgery my taste was different. Cretain foods tasted the same while other's were off.  All my surgeon kept telling me before the surgery was that I "wouldn't be a chef"