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

Sam999
Sam999 Member Posts: 319 Member
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
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Comments

  • Sam999
    Sam999 Member Posts: 319 Member
    I have read in other threads
    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
    Billie67 Member Posts: 898
    Sam,
    I am 4 weeks done

    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
    longtermsurvivor Member Posts: 1,842 Member
    I will play
    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
  • phrannie51
    phrannie51 Member Posts: 4,716
    4 weeks out....
    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
    Sam999 Member Posts: 319 Member

    I will play
    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

    Longtimesurvivor,
    This is

    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
  • Sam999
    Sam999 Member Posts: 319 Member

    4 weeks out....
    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

    Phrannie,
    lol, yieah i am

    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
    meaganb Member Posts: 244 Member
    Sam999 said:

    Phrannie,
    lol, yieah i am

    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:)

    I'm 5 almost 6 weeks out and
    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:)
  • KTeacher
    KTeacher Member Posts: 1,103
    I have to think about this one
    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.
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Sam999 said:

    Phrannie,
    lol, yieah i am

    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:)

    3 Months
    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.
  • Grandmax4
    Grandmax4 Member Posts: 723
    Sam
    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
    NeoTheron91 Member Posts: 75
    Taste
    80% of my taste back after 6 months. So it will take a while to get all back.

    cheers,
    Neo
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    I'll eat it but I won't like it
    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.
  • Laralyn
    Laralyn Member Posts: 532
    Not sure when it started...
    ...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!
  • KTeacher
    KTeacher Member Posts: 1,103
    CivilMatt said:

    I'll eat it but I won't like it
    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.

    Mature!
    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.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Laralyn said:

    Not sure when it started...
    ...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!

    I am 6 months out ...and have nearly full taste back
    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
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    KTeacher said:

    Mature!
    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.

    berries
    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    A Taste Of Honey ~ Herb Alpert
    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
  • meaganb
    meaganb Member Posts: 244 Member
    Laralyn said:

    Not sure when it started...
    ...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!

    Laralyn, my daughter loved
    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!!
  • Sam999
    Sam999 Member Posts: 319 Member
    Skiffin16 said:

    A Taste Of Honey ~ Herb Alpert
    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

    Looks like everyone's does
    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
    olybee Member Posts: 85
    Sam999 said:

    Looks like everyone's does
    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

    interesting
    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.