Taste Buds and Eating Normal Again?

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JoeA
JoeA Member Posts: 9
edited September 2012 in Head and Neck Cancer #1
I was diagnosed with SCC on the right side base-of-tongue in July 2010. I started treatment in late September 2010. I had 35 radiation treatments and 3 chemo (simplatin). That was 2 years ago and I am doing great. The only thing is my taste still has not come back. I can taste food, and the first couple of bites actually taste OK...then the third bite on taste bad. Bread and sweets are a no-no.

Mexican food seems to be the only food that seems to taste good through the entire meal.

Has any one else experienced this? Has anyone else gone 2 years without their taste fully recovering?

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome
    I had similar treatment for STGIII Tonsil Cancer.

    While it di take nealry two years to completely get my taste back, it has come back. I experienced what you have, but only for the forst few months.

    How is your saliva, that was a big part of my not having taste I think?

    I have around 95% of that return.

    I at over three years post Tx now.

    Again, welcome, this is a great forum with a lot of awesome folks. Moew will chime in soon with their experiences.

    Best,
    John
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    can you taste that?
    Hi Joe,

    I am only 25 weeks post with minimal taste bud recovery. I had Clam Chowder today for lunch, but it was just fair (I give it a 3). Now 2 years ago I had top notch, first class taste buds, those were the days. I do like sweet tea (with Sweet’n Low) it tastes great (I give it a 7 or 8).

    I’ll keep on plugging, check back in 79 weeks and I’ll let you know what the 2 year report is.

    Best,

    Matt
  • Barbara B
    Barbara B Member Posts: 40
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    CivilMatt said:

    can you taste that?
    Hi Joe,

    I am only 25 weeks post with minimal taste bud recovery. I had Clam Chowder today for lunch, but it was just fair (I give it a 3). Now 2 years ago I had top notch, first class taste buds, those were the days. I do like sweet tea (with Sweet’n Low) it tastes great (I give it a 7 or 8).

    I’ll keep on plugging, check back in 79 weeks and I’ll let you know what the 2 year report is.

    Best,

    Matt

    Trick your taste buds
    Hi Joe,

    My husband is one year post treatment and is experiencing similar issues with taste. He has about half a meal and then the taste of food changes and he stops eating.

    We found that if he eats a "buffet" type meal with a little bit of different flavors, his taste buds hang in there longer. We are optimistic that he will continue to improve but for now this seems to work.

    Last night in his plate: (small portions of) BBQ chicken, grilled pepper, spicy tomato, fried potato with onions. He says by changing things up he tricks his taste buds.

    Hope it helps!

    Barbara
  • katenorwood
    katenorwood Member Posts: 1,912
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    Barbara B said:

    Trick your taste buds
    Hi Joe,

    My husband is one year post treatment and is experiencing similar issues with taste. He has about half a meal and then the taste of food changes and he stops eating.

    We found that if he eats a "buffet" type meal with a little bit of different flavors, his taste buds hang in there longer. We are optimistic that he will continue to improve but for now this seems to work.

    Last night in his plate: (small portions of) BBQ chicken, grilled pepper, spicy tomato, fried potato with onions. He says by changing things up he tricks his taste buds.

    Hope it helps!

    Barbara

    I've been doing this too !
    Barbara,
    Me too...and most times it works ! It's good to try to get into our bodies what it needs to boost that immune system ! Good idea everyone ! Katie
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Ya I resemble that remark
    Hi Joe

    I finished up the same treatment regime in mid May of 2010. Taste is still off and eating is still a challenge. Very little saliva to speak of. I can't taste sweet. Wines taste like vinegar, but I can get through about half of a light beer. Meats are mostly too dry, but work in tiny bites. Vegetables are yummy, cooked or raw. I'm a big sourdough bread fan, and I can get that down with lots of butter or olive oil. The 'taste fatigue' you describe is a common effect.

    We'll always have Mexican food...

    Deb
  • JoeA
    JoeA Member Posts: 9
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    D Lewis said:

    Ya I resemble that remark
    Hi Joe

    I finished up the same treatment regime in mid May of 2010. Taste is still off and eating is still a challenge. Very little saliva to speak of. I can't taste sweet. Wines taste like vinegar, but I can get through about half of a light beer. Meats are mostly too dry, but work in tiny bites. Vegetables are yummy, cooked or raw. I'm a big sourdough bread fan, and I can get that down with lots of butter or olive oil. The 'taste fatigue' you describe is a common effect.

    We'll always have Mexican food...

    Deb

    Taste Fatigue...is exactly right!
    Deb, thanks for the response and the advise. My saliva is probably 50% at best. I did get a prescription for Pilocarpine which really helps with the saliva...but only for about 2-3 hours.

    Like you wine is terrible, but 1 or 2 beers seem to go down OK. I eat a lot of Mexican food. I can eat some chicken and a little beef but not really much before I have to just give up. Bread and sweets of any kind are a no-go. Most vegetables are also OK.

    I think for me, I just want to know if it is ever going to improve or is this it. The hoping it will be different each time I put food in my mouth wears me out. But if I knew for sure this is it, maybe I could just move on....may sound silly, but it is constantly on my mind.

    Joe
  • JoeA
    JoeA Member Posts: 9
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    Barbara B said:

    Trick your taste buds
    Hi Joe,

    My husband is one year post treatment and is experiencing similar issues with taste. He has about half a meal and then the taste of food changes and he stops eating.

    We found that if he eats a "buffet" type meal with a little bit of different flavors, his taste buds hang in there longer. We are optimistic that he will continue to improve but for now this seems to work.

    Last night in his plate: (small portions of) BBQ chicken, grilled pepper, spicy tomato, fried potato with onions. He says by changing things up he tricks his taste buds.

    Hope it helps!

    Barbara

    Trick You Tatse Buds - Good Advice
    Barbara, thanks for the response and the advise. I have found that small portions work better and going to a buffet I can really get full. My wife is getting tired of trying to fix the "nightly" buffet.

    Maybe over time things will improve, but challenging waiting for it to get better. But at the same time I am very thankful that I have any taste at all and surgery was not required.

    Joe
  • JoeA
    JoeA Member Posts: 9
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    Skiffin16 said:

    Welcome
    I had similar treatment for STGIII Tonsil Cancer.

    While it di take nealry two years to completely get my taste back, it has come back. I experienced what you have, but only for the forst few months.

    How is your saliva, that was a big part of my not having taste I think?

    I have around 95% of that return.

    I at over three years post Tx now.

    Again, welcome, this is a great forum with a lot of awesome folks. Moew will chime in soon with their experiences.

    Best,
    John

    John, congratulations!
    John, thanks for the response and the advise. My saliva is probably 50% at best. I did get a prescription for Pilocarpine which really helps with the saliva...but only for about 2-3 hours.

    I am thankful that I have any taste, because I have seen others that never get any taste back...


    Joe
  • JoeA
    JoeA Member Posts: 9
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    CivilMatt said:

    can you taste that?
    Hi Joe,

    I am only 25 weeks post with minimal taste bud recovery. I had Clam Chowder today for lunch, but it was just fair (I give it a 3). Now 2 years ago I had top notch, first class taste buds, those were the days. I do like sweet tea (with Sweet’n Low) it tastes great (I give it a 7 or 8).

    I’ll keep on plugging, check back in 79 weeks and I’ll let you know what the 2 year report is.

    Best,

    Matt

    Clam Chowder - YUM!
    Matt, thanks for the response and good luck to you....seems like most people get most of their taste back over time.

    Joe
  • Paintslinger
    Paintslinger Member Posts: 70
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    I can relate.
    Hey Joe,
    I had the same diagnosis, but my HPV+SCC (same place as yours) had metastisized to a lymph node in my neck. I also had the exact same treatment regimen that you did. I'm currently almost a year post-treatment. My saliva is just starting to come back. I still get a really dry mouth at night. Most of my taste has come back except for the "sweet"; I can't taste ANYTHING sweet. Hard to describe but you can probably relate.
    The thing that I found so surprising is how many foods have a sweet component to their flavor. If I eat ANYTHING that has a sweet taste, I can get the "base flavor" but the sweet aspect of the food is completely absent. Very weird.
    Anyway, take care and good luck with everything,
    Paul
  • Paintslinger
    Paintslinger Member Posts: 70
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    JoeA said:

    Clam Chowder - YUM!
    Matt, thanks for the response and good luck to you....seems like most people get most of their taste back over time.

    Joe

    Clam chowder

    While I was undergoing treatment the only thing I could "almost" taste was Rice Crispies, and New England clam chowder. Needless to say that when I COULD eat, I ate a lot of both. Strangely enough (or maybe not) I can't bring myself to eat either one of them any longer! I'm now almost one year post-treatment.
    Take care, guys,
    Paul
  • Paintslinger
    Paintslinger Member Posts: 70
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    JoeA said:

    Taste Fatigue...is exactly right!
    Deb, thanks for the response and the advise. My saliva is probably 50% at best. I did get a prescription for Pilocarpine which really helps with the saliva...but only for about 2-3 hours.

    Like you wine is terrible, but 1 or 2 beers seem to go down OK. I eat a lot of Mexican food. I can eat some chicken and a little beef but not really much before I have to just give up. Bread and sweets of any kind are a no-go. Most vegetables are also OK.

    I think for me, I just want to know if it is ever going to improve or is this it. The hoping it will be different each time I put food in my mouth wears me out. But if I knew for sure this is it, maybe I could just move on....may sound silly, but it is constantly on my mind.

    Joe

    Not silly at all
    Buddy, we eat every day (or at least those of us that are fortunate enough to do so). It's something--I mean the whole "experience" of eating--that we all probably take for granted. But when you've been through something like this, and there appear to be permanent changes to something so basic as the taste of foods, it is bound to affect ANYBODY. So, no, I don't think that you're being silly at all. We've all been through a lot and we should be glad we have a forum like this to touch base with others that can relate to what we're going through.
    take care,
    Paul
  • Sam999
    Sam999 Member Posts: 319 Member
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    I can relate.
    Hey Joe,
    I had the same diagnosis, but my HPV+SCC (same place as yours) had metastisized to a lymph node in my neck. I also had the exact same treatment regimen that you did. I'm currently almost a year post-treatment. My saliva is just starting to come back. I still get a really dry mouth at night. Most of my taste has come back except for the "sweet"; I can't taste ANYTHING sweet. Hard to describe but you can probably relate.
    The thing that I found so surprising is how many foods have a sweet component to their flavor. If I eat ANYTHING that has a sweet taste, I can get the "base flavor" but the sweet aspect of the food is completely absent. Very weird.
    Anyway, take care and good luck with everything,
    Paul

    I am almost 11 weeks post
    I am almost 11 weeks post rads and sweet is not back. What i have noticed is that i can taste sweet in most natural flavor. I can taste organic sugar more than regular, also taste more sweet in smoothies that use sugar cane juice for sweet.

    I tried different ice creams but none of them taste too good. I dont know if it is the sugar they use or the coldness of it.

    I loooooov mexican food, but for now it is a no go. I keep trying every few days.

    Sam
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Hey Joe
    Kind of sounds like a Hendrix song, doesnt it? Anyway, I have been treated with rads twice. The first time was fourteen years ago, for BOT cancer. It took 4-5 years for taste to be completely normal after that. My second treatment was last year, and my sense of taste was normal almost immediately after treatment ended. Dont know why, thats just the way it has been for me. If you have taste now, even though it fades, it will eventually be normal.

    Pat
  • JoeA
    JoeA Member Posts: 9
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    Hey Joe
    Kind of sounds like a Hendrix song, doesnt it? Anyway, I have been treated with rads twice. The first time was fourteen years ago, for BOT cancer. It took 4-5 years for taste to be completely normal after that. My second treatment was last year, and my sense of taste was normal almost immediately after treatment ended. Dont know why, thats just the way it has been for me. If you have taste now, even though it fades, it will eventually be normal.

    Pat

    Hendrix Song...???
    Hello Pat and thank you for your response.

    I wish I could be guaranteed it will come back, even if its a couple from now. But it has greatly improved in the past year. I was on a total fluid diet for about 9-months after treatment. Everything tasted so bad that I could not swallow... Glad that phase is over.

    I never had much of a sweet tooth so I don't miss that, but I do miss the taste of a hamburger and Chinese food the most. I lived on hamburgers most of my life which obviously were not that great for me...but I miss them.

    Different topic...did your cancer come back 14 years later in the same place on BOT?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    JoeA said:

    Hendrix Song...???
    Hello Pat and thank you for your response.

    I wish I could be guaranteed it will come back, even if its a couple from now. But it has greatly improved in the past year. I was on a total fluid diet for about 9-months after treatment. Everything tasted so bad that I could not swallow... Glad that phase is over.

    I never had much of a sweet tooth so I don't miss that, but I do miss the taste of a hamburger and Chinese food the most. I lived on hamburgers most of my life which obviously were not that great for me...but I miss them.

    Different topic...did your cancer come back 14 years later in the same place on BOT?

    the Hendrix song "Hey Joe"
    My second cancer was a second primary. Different location. The second cancer recurred after radical surgery. The recurrance was treated with chemo and rads. Reoccurances happen in the first three years, but second cancers, unfortunately, happen to 10-20 percent of us. thats a great reason to maintain long term follow up.....
  • PatDarago
    PatDarago Member Posts: 14
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    Joe,
    I to was treated for

    Joe,
    I to was treated for BOT in 2010. I am doing well with a few dental issues but still eating. The taste of food in blend and just like you ,I can taste food for the first few bites and then nothing when the food hits the back of my mouth. But I really enjoy eating and look at it as I am very lucky just to be able to eat. Good to know there are people like me who are having the same issues but are truly glad to be alive.
    Pat
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    JoeA said:

    Taste Fatigue...is exactly right!
    Deb, thanks for the response and the advise. My saliva is probably 50% at best. I did get a prescription for Pilocarpine which really helps with the saliva...but only for about 2-3 hours.

    Like you wine is terrible, but 1 or 2 beers seem to go down OK. I eat a lot of Mexican food. I can eat some chicken and a little beef but not really much before I have to just give up. Bread and sweets of any kind are a no-go. Most vegetables are also OK.

    I think for me, I just want to know if it is ever going to improve or is this it. The hoping it will be different each time I put food in my mouth wears me out. But if I knew for sure this is it, maybe I could just move on....may sound silly, but it is constantly on my mind.

    Joe

    Joe
    This is never 'it.' It is different every day, even for me. There are folks here who insist that, even years later, things can change. Never give up. Never surrender.

    Deb
  • JoeA
    JoeA Member Posts: 9
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    PatDarago said:

    Joe,
    I to was treated for

    Joe,
    I to was treated for BOT in 2010. I am doing well with a few dental issues but still eating. The taste of food in blend and just like you ,I can taste food for the first few bites and then nothing when the food hits the back of my mouth. But I really enjoy eating and look at it as I am very lucky just to be able to eat. Good to know there are people like me who are having the same issues but are truly glad to be alive.
    Pat

    Yep its better than the alternative
    Hello Pat,

    Good to know I am not alone. I also enjoy eating and am able to get most foods down without any problem. Any type of meat is still a bit of a challenge, but that is OK since I really don't need to eat meat anyway. So much of life revolves around eating it sucks not being able to enjoy food like others, but I like you am thankful that I am alive.

    I still go to my ENT every 3-months hoping that will change to every 6-months after my October visit... how about you?

    Joe
  • JoeA
    JoeA Member Posts: 9
    Options

    I can relate.
    Hey Joe,
    I had the same diagnosis, but my HPV+SCC (same place as yours) had metastisized to a lymph node in my neck. I also had the exact same treatment regimen that you did. I'm currently almost a year post-treatment. My saliva is just starting to come back. I still get a really dry mouth at night. Most of my taste has come back except for the "sweet"; I can't taste ANYTHING sweet. Hard to describe but you can probably relate.
    The thing that I found so surprising is how many foods have a sweet component to their flavor. If I eat ANYTHING that has a sweet taste, I can get the "base flavor" but the sweet aspect of the food is completely absent. Very weird.
    Anyway, take care and good luck with everything,
    Paul

    No Sweet Taste
    Hello Paul, I can totally relate to the sweet thing. I can not taste anything sweet, like you I can taste the food, just not the sweet taste. I use to love donuts (apple fritter) and now I can eat a few bites of one and that is it. I also have trouble with any type of meat. I guess it is not all bad, nether the meat nor the donuts are good for me anyway.

    I have started to develop new taste of foods. Trying to forget what they use to taste like and just concentrate on what they taste like now.

    I was wondering if anyone has ever tried hypnosis (which I am not sure I believe in anyway) to trick yourself into believing foods taste the way they use to? Sounds wacky but.....

    Joe