Do all taste buds come back ?

Robyn64
Robyn64 Member Posts: 124
edited October 2014 in Head and Neck Cancer #1

Hi there,

Wondering if anybody had all their taste buds come back. I'm hoping it does, I seem to be able to taste most things, some have even changed slightly because it's not 100%.

I still have a sore mouth, maybe thrush or mucositis, unsure, being treated for the latter with a medicine not on the market yet, not a big change.

Had Dr's look down my throat 2 days ago, said it was healing perfectly but still swollen especially the epiglottis  which I assume is why I tend to gag a lot.

Still have peg, reading another post, it weeps and bleeds and use gauze. Nutritionist is now concerned, I'm losing too much weight now. By rights in normal circumstances, I need to lose another 10 kgs but have now lost 21 kgs. I cannot stop losing, not eating enough, still no appetite. How long before anyone else got their appetite back, am very worried about it, it's been 8 weeks since treatment.

Thanks,

Robyn

Comments

  • edbravo
    edbravo Member Posts: 63
    Hi Robyn,
    I believe not 100%.

    Hi Robyn,

    I believe not 100%. So far after about 6 months post treatment I am able to taste again however for a little while and than its gone. Usually the first bite taste fantastic and than its gone. I have lost much weight because of this. 

  • Guzzle
    Guzzle Member Posts: 710
    edbravo said:

    Hi Robyn,
    I believe not 100%.

    Hi Robyn,

    I believe not 100%. So far after about 6 months post treatment I am able to taste again however for a little while and than its gone. Usually the first bite taste fantastic and than its gone. I have lost much weight because of this. 

    90%

    reckon Im 90%!

  • yensid683
    yensid683 Member Posts: 349
    Mine did...

    But some tastes are tough to take due to the dry mouth issues.  Sour is very intense and therefore unpleasant.  I saw a TV show about the popularity of sour candies and the body's response to sour - flood the mouth with saliva.  With saliva only around 80% or so, I don't get to eat or enjoy my favorite candy, Lemonheads!

    I was some 5 months post rads before taste moved beyond the 'fleeting' aspect you've noted.  I could taste the first bite or so, but it would fade.  I'm two years post and at this point, taste is just about normal (save that sour impact).

    My experience with this and reading all the posts make me agree more and more with opinions here that everyone is unique.  Taste will come back, but it will take time.

    I too had a PEG tube and used 6 cans of Jevity a day and could not hold my weight.  I started adding whole milk and heavy cream concoctions just to boost the caloric intake.  I was able to stop the slide but didn't start gaining until I started eating regular food again.  I tracked calories and it wasn't until I crossed the 3500 a day threshold that I started gaining something back.

    Hang in there, it will get better

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    I had lost too much weight

    too, but darn it...it's come back.  My taste buds are pretty much all back now, but they are different.  I enjoy things that I didn't before and I can't stand certain things that I once loved.  I finished tx 6/21/13 and have put back on almost all of the weight that I had lost.....I'd like to get rid of about 10 of those lbs.  The doctors said that I may not get full taste back since mine was MEC of the salivary gland, but I'm tasting things pretty darn well.  I had a PEG, too, and was starting to rely on it way too much.  I went to a buffet and tried a little of everything to see what I "liked".  Wishing you all the best!!!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    They're Back....

    Mine did also....

    The majority within the frst 6 - 12 months... Though it was more ike 2 years to completely come back... Ice cream being the last to arrive...

    T&P,

    John

  • Sable1
    Sable1 Member Posts: 14
    Can't wait for taste buds to be back 100%

     

    Hi Robyn:

     

    I am 4 months post treatment and my taste buds are at about 60%.  Everyday seems to be different. Almost like my tongue controls anything I eat. I was more fortunate and didn't need a peg though I am struggling to gain weight back. I lost 38 pounds and was already a small woman. Now, I'm just skinny. I survived on Ensure Plus during treatment and I'm still drinking it in hopes that it will help me put back on the weight. One thing is for sure, and everyone will probably agree, I am glad that I am post treatment. Dealing with the RAD was much more of a challenge, so I can handle my tongue controlling what I can and can not eat. We are all WARRIORS!

     

    Sable1

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    taste this

    Robyn,

    For me, at 2y6m, all my taste at 100% - NOPE.

    Taste enjoyment is fine, finding foods which taste good is a treat.

    My timeline (while constantly trying things) was 7 months before I returned to the pod of normal eaters.  It is different, I am now a slow at finishing and I take multiple glasses of drink per meal.

    Overall, the “new normal” is pretty great.

    Matt

  • edbravo
    edbravo Member Posts: 63
    Sable1 said:

    Can't wait for taste buds to be back 100%

     

    Hi Robyn:

     

    I am 4 months post treatment and my taste buds are at about 60%.  Everyday seems to be different. Almost like my tongue controls anything I eat. I was more fortunate and didn't need a peg though I am struggling to gain weight back. I lost 38 pounds and was already a small woman. Now, I'm just skinny. I survived on Ensure Plus during treatment and I'm still drinking it in hopes that it will help me put back on the weight. One thing is for sure, and everyone will probably agree, I am glad that I am post treatment. Dealing with the RAD was much more of a challenge, so I can handle my tongue controlling what I can and can not eat. We are all WARRIORS!

     

    Sable1

    Is losing weight a good thing

    Is losing weight a good thing or bad for us special people...ha ha ha, cause my doctor was really glad that I had lost 30kgs, thats about 60+Ibs, by the way my height is about 5feet 11in. from a fatty i became a skinny wack...lol...thats what my wife said.

  • ditto1
    ditto1 Member Posts: 660
    CivilMatt said:

    taste this

    Robyn,

    For me, at 2y6m, all my taste at 100% - NOPE.

    Taste enjoyment is fine, finding foods which taste good is a treat.

    My timeline (while constantly trying things) was 7 months before I returned to the pod of normal eaters.  It is different, I am now a slow at finishing and I take multiple glasses of drink per meal.

    Overall, the “new normal” is pretty great.

    Matt

    THIS (taste) BUDS FOR YOU

    Well I would say my buds are at 90%, still an issue with sweets.  I do think that some of the taste are altered a little from the way they were before cancer.  I had thoart cancer stage IV HPV positive 33 rads and around 9 chemos.  The funny thing for me is before cancer I did not really like hot or spicy foods, now hotter the better.  My wife says I put hot sauce on everything, and surprised I do not put it on my ice cream... well obviously I do not spice up everything but most things that being hot or spicy is compatible with.  Recently I had some hot wings at a local restaurant and I asked Diane if she wanted to try one, she took one bite and her eyes lit up and she said her tongue was numb????  So not sure what change in me to be able to tolerate and enjoy what looks to be torture for others, but I am loving it.  I eat slower and not as much but to wrap it up you will get there.  Also a shout out to all my old bus mates and others who went thru my journey with me.  Diane keeps me updated between this site and FB.

  • donfoo
    donfoo Member Posts: 1,771 Member
    100%

    Hi,

     

    My taste buds took a big hit like nearly all during treatment but bounced back nicely during recovery. I'd say about 90% at six months post and 100% by twelve months. The only eating related side effect is my lack of tolerance for eating spicy hot. It used to take speciality hot sauces made from concentrated habanero peppers to get me sweating. Now my head sweats with most chilis. And my mouth goes on fire with hot chili which it never did before.

  • hrowe
    hrowe Member Posts: 57
    I'm 2.75 years out

    and taste is back to normal for sweets and I am able to put Franks's Hot Sauce on eggs again. Hamburger tastes rather flat. Maybe 40% of normal. Pork and chicken are fairly normal. Not a seafood eater. Soft drinks taste terrible. Beer and wine taste terrible so I no longer drink. I'm a sweet tea addict now. Saliva is maybe 70% of normal? Ice cream is starting to taste better. Maybe 60% of normal?

    I only go through 2 water bottles at work now and that includes eating popcorn as a snack (which tastes great again).

    Taste return was not a linear process for me. It would improve a little for 6 months, then flatten out for a few months, and then get better. It is still improving because I am starting to tolerate spicy food again, though my habanero days are over!

    First thing that came back for me was savory flavors.

  • Hiyah Robyn
    (Are you the

    Hiyah Robyn

    (Are you the Robyn on my facebook?)

    My taste has been very variable. It comes and goes. Sometimes it'll go for several weeks, then come back again out of the blue.

    Sometimes it's reasonable, although sorry to say, never perfect.

    Sometimes it's distorted, and things seem to taste either bland or very bitter.

    My cancer nurse told me it can take 18 months to settle down, so mate, it's early days for both of us x x x x

  • Robyn64
    Robyn64 Member Posts: 124
    Estelle_H said:

    Hiyah Robyn
    (Are you the

    Hiyah Robyn

    (Are you the Robyn on my facebook?)

    My taste has been very variable. It comes and goes. Sometimes it'll go for several weeks, then come back again out of the blue.

    Sometimes it's reasonable, although sorry to say, never perfect.

    Sometimes it's distorted, and things seem to taste either bland or very bitter.

    My cancer nurse told me it can take 18 months to settle down, so mate, it's early days for both of us x x x x

    Hi Estelle, Yes

    Hi Estelle,

    I am the same Robyn on your Facebook.  Thank you for your comments. :-)

    Robyn

  • Robyn64
    Robyn64 Member Posts: 124
    thank you all

    Thanks everybody for your messages.

    Robyn :-)

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    robyn, in my honest opinion,

    robyn, in my honest opinion, I don't think it will ever be 100% again but it will be good enough to enjoy eating again.  there are still things i cannot eat because they don't taste right but there is enough that i can eat to make up  for those things.  so, eating will come, and it will get to a point where you enjoy it again.  give it time.

    dj

  • Jeff2159
    Jeff2159 Member Posts: 108
    my taste buds

    never really went away but things do taste different. Alcohol and carbonated beverages burn my mouth. Too salty or spicey can burn. Apple and grape juice taste ok but orange juice burns and gatorade tastes like chemicals. Carrots and onions can taste sweet. Food is much more flavorful for me even as I have to puree everything due to my swallowing issues.

     

    Jeff