Taste!!

Tonsil Dad
Tonsil Dad Member Posts: 488
in Head and Neck Cancer #1
I know I've touched on this subject before but did anybodys
taste come and go? . I'm 5 weeks post rads and still have no
saliva but my taste is weird!!! I could start to taste little bits
of food on the tip of the tongue and when it went in the mouth
the taste had gone, now all the taste has gone completly gone
not even at the tip. I'm just asking does this come and go before it
gets better.

"PLEEEEEESE COME BACK SOOOOON"

God bless
Tonsil dad,

Dan.

Comments

  • jtl
    jtl Member Posts: 456
    #2
    Pretty normal I would say.
    Pretty normal I would say. I believe there is some correlation between saliva and taste. I never totally lost my taste or saliva but it was close. Now at 6 months post I have plenty of saliva but the taste is weird. I can taste things but the intensity fades in and out as I eat. You are still very early, at your point in time I still had a major sore throat making it difficult to eat at all. Good Luck.
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    jtl said:

    Pretty normal I would say.
    Pretty normal I would say. I believe there is some correlation between saliva and taste. I never totally lost my taste or saliva but it was close. Now at 6 months post I have plenty of saliva but the taste is weird. I can taste things but the intensity fades in and out as I eat. You are still very early, at your point in time I still had a major sore throat making it difficult to eat at all. Good Luck.
    John

    new taste buds coming in
    that's a good sign, kind of like the first flowers that pop through in spring, you are on your way back. Some argue about the number of tastes', four or five?, but they grow back like plants, some come before others. I tasted nothing but salt for six months, could eat a tsp of honey and it would taste like salt. Some taste heavy metals, like iron?? Doesn't matter, as long as those buds are budding.
  • GReid
    GReid Member Posts: 6
    #4
    taste
    i'm five weeks out form tonsil/lymph node dissection/cisplatin/rads..i can taste salad and dressing/sour fine..no sweet..taste dumbed down about 40 % for everything..still have to hydrocodone b4 a meal..still on the PEG thank God..first meal of any size last night..feel like little bits of stuff behind my uvula and under base of tongue,but its all in my head,no pun intended..different for everyone..i may not keep what taste i have,but i hope i do..Good luck amigo...
  • jtl
    jtl Member Posts: 456
    #5
    GReid said:

    taste
    i'm five weeks out form tonsil/lymph node dissection/cisplatin/rads..i can taste salad and dressing/sour fine..no sweet..taste dumbed down about 40 % for everything..still have to hydrocodone b4 a meal..still on the PEG thank God..first meal of any size last night..feel like little bits of stuff behind my uvula and under base of tongue,but its all in my head,no pun intended..different for everyone..i may not keep what taste i have,but i hope i do..Good luck amigo...

    For what ever reason the
    For what ever reason the sweet side seems to be the most difficult to re-establish. I guess it is good if you want to diet but it sucks for everything else. I took the same med, once a day for a while. Still have some. The good news is it will get alot better, but don't rely on the PEG if you can avoid it because it will delay your recovery.
    John
  • jim and i
    jim and i Member Posts: 1,788 Member
    #6
    normal for taste
    Normal for taste, if you can call anything normal after treatment. Jim's taste has come and gone since treatment end (August 2011) but is a lot better now. He still can;t eat sweets, they taste bad, but most other taste isn't bad. He has found if something doesn't taste right try it again and it is fine.

    God Bless
    Debbie
  • GReid
    GReid Member Posts: 6
    #7
    jtl said:

    For what ever reason the
    For what ever reason the sweet side seems to be the most difficult to re-establish. I guess it is good if you want to diet but it sucks for everything else. I took the same med, once a day for a while. Still have some. The good news is it will get alot better, but don't rely on the PEG if you can avoid it because it will delay your recovery.
    John

    PEG and survival
    just about finished with the PEG i think,pray,hope..had to install it 4th week..everything by mouth made me gag,due to bad/no taste..but have to keep up 2400 calories..
  • mls351w
    mls351w Member Posts: 90
    #8
    jim and i said:

    normal for taste
    Normal for taste, if you can call anything normal after treatment. Jim's taste has come and gone since treatment end (August 2011) but is a lot better now. He still can;t eat sweets, they taste bad, but most other taste isn't bad. He has found if something doesn't taste right try it again and it is fine.

    God Bless
    Debbie

    taste
    My taste came back really quick and I think things actually taste better than before.
    However, I went through treatment 6 years ago and it seems that while I'm eating, my taste slowly lessens until I don't taste very much or it doesn't taste nearly as strong. And I never have to put salt on anything. But potatoe chips sometimes taste so salty that I cannot eat them.
    Not complaining at all. I have talked to people in oncology waiting areas that have no taste at all or everything tastes awful to them, even years after their treatment.
    It may take you a little longer to get your taste back to whatever normal is.

    Best wishes
    Mark S.
  • nwasen
    nwasen Member Posts: 235 Member
    #9
    mls351w said:

    taste
    My taste came back really quick and I think things actually taste better than before.
    However, I went through treatment 6 years ago and it seems that while I'm eating, my taste slowly lessens until I don't taste very much or it doesn't taste nearly as strong. And I never have to put salt on anything. But potatoe chips sometimes taste so salty that I cannot eat them.
    Not complaining at all. I have talked to people in oncology waiting areas that have no taste at all or everything tastes awful to them, even years after their treatment.
    It may take you a little longer to get your taste back to whatever normal is.

    Best wishes
    Mark S.

    Taste!
    Not having your taste buds sure sucks. I can't remember when mine came back. I know they went out soon after my radiation started. I was at a friend's and we were having homemade manicotti. It tasted like what I would imagine dirt would taste like. I was so upset....soon after, I lost a ton of weight and had the dreaded PEG tube (the worst part of all my treatments, etc).
    I started to regain taste maybe 8 weeks post treatment. It came back slowly. Eventually it all came back but some things burned my tongue, especially fresh strawberries and pineapple (two of my faves).
    But time can help. Some never regain salty or sugar and some do. The new normal for all of us is sure different. I just kept trying small bits of things to experiment. Just last week I tried pineapple very carefully and to my utter delight; no burning!
    Good luck and hope you are as successful as I have been.
    Peace, Nancy
  • CajunEagle
    CajunEagle Member Posts: 408
    #10
    nwasen said:

    Taste!
    Not having your taste buds sure sucks. I can't remember when mine came back. I know they went out soon after my radiation started. I was at a friend's and we were having homemade manicotti. It tasted like what I would imagine dirt would taste like. I was so upset....soon after, I lost a ton of weight and had the dreaded PEG tube (the worst part of all my treatments, etc).
    I started to regain taste maybe 8 weeks post treatment. It came back slowly. Eventually it all came back but some things burned my tongue, especially fresh strawberries and pineapple (two of my faves).
    But time can help. Some never regain salty or sugar and some do. The new normal for all of us is sure different. I just kept trying small bits of things to experiment. Just last week I tried pineapple very carefully and to my utter delight; no burning!
    Good luck and hope you are as successful as I have been.
    Peace, Nancy

    Nancy....
    Fresh or canned Pineapple ?? Canned with the syrup gave me problems a few months back, but tried it night before last with cottage cheese, and wow........it was so good. Wonder if the brands make a difference ?? So many trial and error experiments in our lives these days.

    Larry
  • Marty36
    Marty36 Member Posts: 84
    #11
    nwasen said:

    Taste!
    Not having your taste buds sure sucks. I can't remember when mine came back. I know they went out soon after my radiation started. I was at a friend's and we were having homemade manicotti. It tasted like what I would imagine dirt would taste like. I was so upset....soon after, I lost a ton of weight and had the dreaded PEG tube (the worst part of all my treatments, etc).
    I started to regain taste maybe 8 weeks post treatment. It came back slowly. Eventually it all came back but some things burned my tongue, especially fresh strawberries and pineapple (two of my faves).
    But time can help. Some never regain salty or sugar and some do. The new normal for all of us is sure different. I just kept trying small bits of things to experiment. Just last week I tried pineapple very carefully and to my utter delight; no burning!
    Good luck and hope you are as successful as I have been.
    Peace, Nancy

    I found it depended on what/how I was eating
    I could taste food in the front of my mouth, but the longer I "processed," the less I could taste. I never figured out why I could taste the fruit in a smoothie, but not other stuff. I also found distinct tastes--olive oil--were better than a combination of tastes. In the end, I lost the taste during radiation, but it came back quickly (weeks). When it returned, I loved food with deep and spicy taste because it was more lively. Food has more "taste" on the tip of my tongue than it did further back on my tongue. Like a lot of people, I've never regained interest in chocolate (although I never liked it that much to begin with).

    During my second round of radiation, directly to my mouth, I surprisingly lost very little taste, although spicy foods are now a challenge because of dry mouth.
  • Grandmax4
    Grandmax4 Member Posts: 723
    #12
    taste
    My taste was weird also, I craved orange juice which I had never liked..this started in December 2011, my surgery that removed the epiglottis was in November 2011. So, for nearly a month and a half, OJ was king. Now it's back to being something I don't like, go figure.

    My taste is now pretty much back to normal, the problem now is being able to swallow without aspirating~~~so, many foods I don't know if I'd like the taste or not. My menu right now is scrambled eggs, v-8 juice, v-8 soups ( they are delicious ) with ritz crackers crumbled in,mashed potatoes and gravy..pork or beef,yogurt, ice cream, boost, ensure and a mix a friend told me about, scandishake...I've only found it on Amazon and it's expensive, but yummy. 2 weeks ago, I had my first cup of coffee, but it isn't as appealing to me as it use to be. And that's pretty much what I eat every day.

    I was blessed by not having to have chemo or radiation after the robotic surgery I had, tests on the nodes removed from my neck for caution, came back negative for cancer , I had a feeding tube for about 4 weeks until my therapy for swallowing was done, all in all, for me, the worse part of eating difficulties is missing going out to eat, I never realized how much our social life revolved around food.

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