Taste buds gone..cant wait for their return...:(

Sam999
Sam999 Member Posts: 319 Member
in Head and Neck Cancer #1
I had my 8th rad on friday and thought i might have good long week-end....i was sooo wrrong! I knew i would lose them but could not it have waited two more days!

Water tasts bad....but trying to get used to new taste.

Fruits taste bland ...but i am okay eating them..does not tase nasty like water does. Will it stay this way or it will change?

Veggies like cucumbes is also tasting okay.

Bread taste like card board.

Had a protein shake with yougrt for lunch. Milk and yougurt taste okay.

I have no peg and will have to coninue to eat, please tell me it is not going to get worse than what is today. I,e, will i lose more taste or this is it?

Sam

Comments

  • jim and i
    jim and i Member Posts: 1,788 Member
    #2
    Well...........
    As is often the answer here, "Everyone is different." For Jim the taste got worse. By the end of treatment everything tasted like poo. Slowly it came back as the radiation sopped working. Sweet taste still is a problem. Howeveer, others on the site have gotten taste back real soon and others never lost their taste. I pray yours doesn't get worse and it comes back quicly.

    Blessings
    Debbie
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I remember the exact moment water
    tasted salty all of a sudden, but can't remember exactly how many rads I'd had...I still drink it tho. I can still taste somethings (milk hasn't lost it's taste), but most other things taste pretty bland...other things sting...I keep testing things, but generally the dry mouth makes doing much more than liquids difficult. Think of eating as a mission instead of a pleasure....it helps...you have to have nutrition, regardless if it has a taste or not.

    p
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
    jim and i said:

    Well...........
    As is often the answer here, "Everyone is different." For Jim the taste got worse. By the end of treatment everything tasted like poo. Slowly it came back as the radiation sopped working. Sweet taste still is a problem. Howeveer, others on the site have gotten taste back real soon and others never lost their taste. I pray yours doesn't get worse and it comes back quicly.

    Blessings
    Debbie

    what Debbie said ...
    I pray it does not get worse Sam ....but it may ...however if I had to taste cardboard the rest of my life to be with my wife and kids ...then by golly I would just salt that cardboard up like there was no tomorrow and go play :):) :)

    Seriously, odds are in your favor you will retain some taste ....so hang in there Sam ....we are praying for you!!!

    Tim
  • Ingrid K
    Ingrid K Member Posts: 813
    #5
    phrannie51 said:

    I remember the exact moment water
    tasted salty all of a sudden, but can't remember exactly how many rads I'd had...I still drink it tho. I can still taste somethings (milk hasn't lost it's taste), but most other things taste pretty bland...other things sting...I keep testing things, but generally the dry mouth makes doing much more than liquids difficult. Think of eating as a mission instead of a pleasure....it helps...you have to have nutrition, regardless if it has a taste or not.

    p

    water not too tasty, try milk
    Sam, hang in there. water will taste like crap for a while. try milk like phrannie says, it was a go to drink for me and you can always put it in shakes/smoothies. w/o a PEG, you will have to maintain the liquids so you stay hydrated. You are doing everything right. Keep trying and tasting different things. For me salt came back first, then sweet. I lived on chocolate pudding and cheesecake for a while--not all bad. You are doing GREAT. KEEP IT UP.
  • Sam999
    Sam999 Member Posts: 319 Member
    #6
    Ingrid K said:

    water not too tasty, try milk
    Sam, hang in there. water will taste like crap for a while. try milk like phrannie says, it was a go to drink for me and you can always put it in shakes/smoothies. w/o a PEG, you will have to maintain the liquids so you stay hydrated. You are doing everything right. Keep trying and tasting different things. For me salt came back first, then sweet. I lived on chocolate pudding and cheesecake for a while--not all bad. You are doing GREAT. KEEP IT UP.

    Thanks so much everyone for
    Thanks so much everyone for cheering up! Today is very hard for me to deal with. I know this will happen but when it hits you, it is vey hard go deal with.

    I just came back from a memorial day get together and which social part was so much fun but the food part was brutal. I guess we will have to get used to the food part?

    It is so good to post and hear back from everyone since you know exactly how this feels!

    Thanks,
    Sam
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #7
    Sam999 said:

    Thanks so much everyone for
    Thanks so much everyone for cheering up! Today is very hard for me to deal with. I know this will happen but when it hits you, it is vey hard go deal with.

    I just came back from a memorial day get together and which social part was so much fun but the food part was brutal. I guess we will have to get used to the food part?

    It is so good to post and hear back from everyone since you know exactly how this feels!

    Thanks,
    Sam

    Sorry.
    Sorry for the loss of your taste Sam, I lost all my tast early on in treatment
    and now I'm 6 weeks out and still no taste, well little bits of taste on the end
    of my tongue but then it dissapears. I never got a PEG and I lost weight but this
    last few weeks I've been eating pretty much normal meals (with the help of LORTAB)
    once a day before my evening meal even though I can't taste it I can smell it. I use
    the LORTAB because I have blisters on the roof and at the back of my mouth, I
    think I get them from eating regular foods ( steak, fish, chicken, fries, potatos,veggies.ect..)
    and its irratating the sensitive radiated skin.

    Anyway good luck with your buds, hope they come back soon.

    God bless
    Tonsil dad,

    Dan.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    Taste Buds On Vacation
    Hi Sam,

    I was three weeks into treatment when my taste buds went on vacation and that was 3 months ago. Little by little things are getting better. I tried a piece (bite) of chicken tonight and it tasted good, only my lack of saliva keep me from enjoying it more.

    Water always tasted good and still does. Fruits and veggies are getting better, but bread (and most starches) taste like cardboard.

    I love my wife’s smoothies (I hear a banana, chocolate one being made right now).

    Things might get worse, but they are sure going to get better. From everything I read (CSN) I’ll be in fat city before long.

    Keep the faith,

    Matt
  • GReid
    GReid Member Posts: 6
    #9
    PEG or not to PEG
    Dont fear the PEG...saved my butt and i made it until end of the fourth week of concurrent rad/chemo..5 weeks post treatment and i still have no sweet and about 50 % of former taste buds..but it beats the alternative outcome..hang in there..do whatever comes next..your body will tell you what to do
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    GReid said:

    PEG or not to PEG
    Dont fear the PEG...saved my butt and i made it until end of the fourth week of concurrent rad/chemo..5 weeks post treatment and i still have no sweet and about 50 % of former taste buds..but it beats the alternative outcome..hang in there..do whatever comes next..your body will tell you what to do

    Sweet
    Seems for most to be the longest in returning. It took nearly two years for sweet to totally return to me.

    Especially Ice Cream..., I'd take one or two bites and the flavor was gone.

    Now after nearly three years, for the past six months or so, I have regained I believe 100% taste, and nearly 95% of my saliva.

    So hang in there, more than likely yours will return as well.

    But like you, at one point, I was just happy to have as much as I did. If it never got any better, I could definitely live with that, and much better than the alternative.

    Best,
    John
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    Let's eat (almost)
    Sam,

    John’s reply has made me hungry. That was the best statement I’ve read about taste this week. I don’t appreciate the time frame, but like the 100% taste and 95% saliva sounded good. It gives us beginners something to look forward too.

    Cheers,

    Matt
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    even in the same person the result varies
    I have been radiated twice. The first time I completely lost my sense of taste when about half way through. i remember gje exact day it happened, sitting in Waffle zhouse starring at my plate wondering what was the point. It took years for taste t return to normal, but it eventually did. This time I never completely lost taste. It is 90 plus percent normal only three months after rads completed. i have no idea why.


    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    CivilMatt said:

    Let's eat (almost)
    Sam,

    John’s reply has made me hungry. That was the best statement I’ve read about taste this week. I don’t appreciate the time frame, but like the 100% taste and 95% saliva sounded good. It gives us beginners something to look forward too.

    Cheers,

    Matt

    Time Frame
    Matt, that time frame was for the 100% & 95%...it was much better within six months or so. Just a lot of things took considerable time.

    I think you just adjust to the taste that you have regained...what tastes good.

    The things that didn't taste the same, I'd set those a side for a few months and try again.

    I remembered for some time being disappointed because my wife makes really good chicken noodle soup.

    For most of a year or more after treatment, it just tasted like a big bowl of chicken fat...nasty, greasy chicken fat, LOL.... Over time, it has come back to taste as great as ever.

    JG
  • hawk711
    hawk711 Member Posts: 566
    #14
    longtermsurvivor said:

    even in the same person the result varies
    I have been radiated twice. The first time I completely lost my sense of taste when about half way through. i remember gje exact day it happened, sitting in Waffle zhouse starring at my plate wondering what was the point. It took years for taste t return to normal, but it eventually did. This time I never completely lost taste. It is 90 plus percent normal only three months after rads completed. i have no idea why.


    Pat

    To the newbies, sam, matt, tim etc
    I am 26 months post treatment and have 90% taste buds back and 70% saliva I'd guess. I remember about 8 months ago I was afraid to go to dinner with friends because I'd stare at the menu just trying to find something I could choke down and not look stupid. I went for 18 months wishing I could eat more and then all of a sudden, I could eat more. I had steak, potatoes and salad last night and it was great. I guess what I'm saying is, give yourself time, not days or weeks, but months. Try to keep a journal and read back 30-60 days and you'll see a difference. I didn't, but wish I had. My wife just kept saying "did you eat anything today" and I would. Now I eat on my own and look forward to lunches with friends again. When you are in the middle of the fight, or still cooking after treatment, the days are long. But the days get shorter and much brighter the longer you are out of treatment. So keep walking forward and keep your chin up, you can do this and life will be better again soon.....
    all the best,
    Steve
  • Sam999
    Sam999 Member Posts: 319 Member
    #15
    hawk711 said:

    To the newbies, sam, matt, tim etc
    I am 26 months post treatment and have 90% taste buds back and 70% saliva I'd guess. I remember about 8 months ago I was afraid to go to dinner with friends because I'd stare at the menu just trying to find something I could choke down and not look stupid. I went for 18 months wishing I could eat more and then all of a sudden, I could eat more. I had steak, potatoes and salad last night and it was great. I guess what I'm saying is, give yourself time, not days or weeks, but months. Try to keep a journal and read back 30-60 days and you'll see a difference. I didn't, but wish I had. My wife just kept saying "did you eat anything today" and I would. Now I eat on my own and look forward to lunches with friends again. When you are in the middle of the fight, or still cooking after treatment, the days are long. But the days get shorter and much brighter the longer you are out of treatment. So keep walking forward and keep your chin up, you can do this and life will be better again soon.....
    all the best,
    Steve

    I did not realize how hard
    I did not realize how hard this is. I guess it will get easier as days goes by? For me since i just lost it, it is hard to cope up.

    Thanks for all the encouraging words.

    Pat, when you say years, for everything to come back? How long does it take to get somewhat salt and sweet taste?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #16
    Sam999 said:

    I did not realize how hard
    I did not realize how hard this is. I guess it will get easier as days goes by? For me since i just lost it, it is hard to cope up.

    Thanks for all the encouraging words.

    Pat, when you say years, for everything to come back? How long does it take to get somewhat salt and sweet taste?

    years to be completely normal
    I probably should have said. I could taste vanillawithin a few weeks of treatment end. salt came back quickly. Sweet took time. Like many other people report, Sweet would fade after a few bites. With this recent treatment, sweet is one thing that I really dont taste. And chocolate tastes bad. I dont know how long it will take for that to change. It took about four years before I could say everything was back to normal. Chocolate and citrus were the longest for me, but eating wasnt a problem after a few months, like maybe six.

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