Start of return of taste

AnotherSurvivor
AnotherSurvivor Member Posts: 384 Member

I got done with tonsil cancer treatment 3 weeks ago, and think I MAY have some taste returning.  Is it common for everything to taste salty?  I also think I can taste real banana (in a smoothie), but am not sure whether the taste is real or I'm imagining it

The salt taste tho, is strong, and constant.  is this the start?

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited January 2017 #2
    Cheers

    AS,

    While I did not get back to “normal eating” for 7 months, there were successes right out of the gate.  Of all things, corn-on-the-cob and sweet tea were great, just a few weeks out.  Then came tomatoes and cucumbers with olive oil, I ate a ton of those.

    I was always trying things (everything).  Mostly with negative results, but some got through and all the try’s mapped an interesting path back to my “new normal”.

    I would eat a spoonful of sugar or toss some salt in my mouth just as a check to taste bud activity.  I tried many of the suggestions from the H&N forum, but found the path of try everything more to my liking.

    When you are ready a buffet is a fun way to see what’s shaking.

    Today I have new favorites and a very happy food life.  It is different than pre-treatment by a quite a bit, but very enjoyable and downright methodical.

    Eat up,

    Matt

  • GooganK
    GooganK Member Posts: 1
    edited January 2017 #3
    Congrats on finishing treatment.

    To answer your question...yes, and expect a swing in the other direction with everything tasting sweet. I'm 7 months removed from 35 treatments, and a case of mucositis which was barely tolerable week 7-9 during and after treatment. My tongue on the left cancer side is still not right, and becomes sore very easily if I don’t brush after eating, use too much hot sauce, and eat too much sour stuff or red sauce. Most of my taste has returned almost too were it was before treatment with the exception of red sauce and pickled things.

    My recommendations: Brush your teeth and tongue immediately after every meal, floss as much as possible, take a good multi vitamin and an Advil each night before bed, and take pilocarpine to increase your saliva (saliva is the “great healer”).

    Food Recommendations: Everyone is different, but these worked for me. Indian, Mexican, and Chinese foods were and still are emotionally and taste satisfying. And, if you try new items of those ethnic foods you will really feel great about eating again.

    Things that did not work for me at your stage: Red sauce, mustard, pickled stuff, sushi, alcohol, pizza, ketchup, soda, OJ, pastries, and everything dry. I still struggle with most of these, but they are all getting better as time goes on.

     

    Keep in mind: As terrified and discouraged as you were or are now, you are a far better human being because of the experience. Good luck to you in the future. 

  • yensid683
    yensid683 Member Posts: 349
    Taste recovers

    and for me the first one to return was salt, though it wasn't extreme.  I had stage 4a SCC, left base of tonque, induction chemo, concurent chemo and rads (erbitux) and found that in the first month I had no real ability to taste anything.  I'd be able to sense some taste with the first bite or sip, but it faded out almost immediately.

    It was roughly 7 or so weeks after the end of rads that my ability to taste anything slowly came back.  Certain tastes and flavors were better than others and yes, salty worked very well.  Sour didn't and to this day, some 4+ years later I don't tolerate sour well.

    Everyone recovers differently and at varying rates.  Give it time, try new things, and don't be discouraged, it will improve....

    Just very slloowwwwwwwllllllyyyyyyy

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited January 2017 #5
    Yes....and whoo hoo for you!!!

    Salty seems to be the first to return....for me, sweet was last (took 3 years for that...but it happened overnight).  Don't be surprised if it comes and goes....you aren't imagining it, tho....nobody has that great of an imagination or we'd use it during treatment....LOL.

    p

  • Raddude
    Raddude Member Posts: 84
    Here it comes...

    you're on your way. Buffet's are a great way to find out what your taste buds are beggining to taste.

  • KB56
    KB56 Member Posts: 318 Member
    taste coming back

    Congratulations on completing treatment!   Now the body can start to heal!  My path back to taste/returning flavor was very similar to Phrannie's.... salt was first and sweet was last (and i remember exactly when that came back).    For me it was only a couple of months for getting my taste back close to where it was before.   I still have trouble with spicy (even a little spicy) but that seems to be getting better over time as well.

    Congratulations!

    keith

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited January 2017 #8
    Popeye

     

    That sounds great, I remember the first thing I tasted it was a crumb from some Popeye fried Chicken. After that if I was anywhere close to a Popeye chicken place I would turn in and get a 10 peace wings. Man, that was good tasting

    Tim   

     

  • Duggie88
    Duggie88 Member Posts: 760 Member
    edited January 2017 #9
    Another Survivor

    I love the name

    Your on the road to recovery. I was told whatever you don't get back in a year you most likely won't but they were wrong. I was still getting taste back for foods 3 years later. Matter of fact after 7 years I was told yesterday that my voice is getting back to what it was before cancer. We are all unique individuals and our bodies recover at different paces and in different ways. I lost 92 pounds during treatment and I go to buffets whenever I get the chance because I tell everyone I am putting all 92 back on and then some.

    Heal On

          Jeff

  • vanbcman
    vanbcman Member Posts: 3
    edited January 2017 #10
    All I tasted at your stage was Salt and Tea

    The taste battle goes on for a while. I am out 1 1/2 years and still getting taste back I think. Your mouth will be raw either from Thrush infections or new skin growth. Avoid tomato based stuff for the next 6 months. I like to call it the "Cream of" stage. All I ate was cream of whatever soup. Mainly because I didn't have to experience food getting stuck in my throat due to a lack of saliva. If you do try something new other than soup or smoothies have 3 glasses of water handy to wash it down. Experiment ... I noticed a difference every two weeks. Something I could not taste one week would be better two weeks later. Weight comes back very slowly I find. For me its been about 5 pounds a year. I am 165 now ..160 after treatment and I was 200 before cancer.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    Waffles

    Waffles, butter and syrup. My 3 meals a day for right now. It works for some odd reason so I will roll with it.

  • dw195
    dw195 Member Posts: 43 Member
    Stinging Tongue

    Anyone else have a stinging tongue? I have some taste left but some things sting like crazy, bananas sting :-( I don't know if it's the radiation, Erbitux or Thrush. The Thrush is almost cleared up but the stinging remains. Anyone else have this? I started week 5 yesterday... Countdown is on :)

    Don

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    Ah, that!  It turns out there

    Ah, that!  It turns out there is some acid in bananas.  My initial exposure was a smooothie with coconut MILK, which went smoothly.  The next was with coconut water, which does not hide the acid.  I do not recommend that until all your mouth sores heal.  For me, I'm guessing some time about 10 weeks post-treatment (I'm at 7 now).  But there was a very strong initial banana taste.

    Also, not all quacamole is a advacado, some people put tomato and lime in their's.  I did not know that.  I've revised my approach to experimentation, somewhat more selective.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    edited February 2017 #14
    Oh, haven't tried a buffet

    Oh, haven't tried a buffet yet, but Costco on Saturdays can be good for small sized items.  Surprisingly, non-spicy chicken-wings are sort of edible.  They are so greasy they sort of slide.  Other things are mostly disappointing.

    I've sort of concluded that I'm getting plenty of calories with my augmented chicken soup, plus the nutrition shakes, and things sort of get a little better every day, so I'll just woose out for a while and give the variety thing another look in a week or so.  It wasn't my original hope, but it seems you can't really push this either.  The nutrition shakes let me target protein, so I'm hoping that pushes healing along.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    dw195 said:

    Stinging Tongue

    Anyone else have a stinging tongue? I have some taste left but some things sting like crazy, bananas sting :-( I don't know if it's the radiation, Erbitux or Thrush. The Thrush is almost cleared up but the stinging remains. Anyone else have this? I started week 5 yesterday... Countdown is on :)

    Don

    Yes Sir

    Yes Sir, I am 3 months post treatment and still fight with a stinging tounge. It has lessened some since about the 2 month post treatment. Yet my diet is still extremely limited to a select few items. I am always trying new foods every week. And yes, every thing still has sting to it. It will pass I am told. Just keep the fight going. Time heals.  Good Luck.

  • rsp
    rsp Member Posts: 103 Member
    Duggie88 said:

    Another Survivor

    I love the name

    Your on the road to recovery. I was told whatever you don't get back in a year you most likely won't but they were wrong. I was still getting taste back for foods 3 years later. Matter of fact after 7 years I was told yesterday that my voice is getting back to what it was before cancer. We are all unique individuals and our bodies recover at different paces and in different ways. I lost 92 pounds during treatment and I go to buffets whenever I get the chance because I tell everyone I am putting all 92 back on and then some.

    Heal On

          Jeff

    Weight loss question

    Hi Jeff,

    I read your post and saw that you lost 92 pounds.  My husband is 2 months post radiation and has lost 65 lbs. so far.  He is 6'1 and looks like he is just skin and bones... I am pushing him to get a peg tube put in and was wondering if you had one?

    Also, did you feel tired and lack energy at 2 months in?  I am guessing this is due to not getting in his required calories.??

    I am getting so worried because my husband just seems to lack energy, wants to sleep, and can only get in one shake a day (he splits it up and drinks 1/3 at a time so he doesn't get nauseated.)

    Thank you for your post!

  • SylMarie
    SylMarie Member Posts: 91 Member
    The taste buds take us on a wild ride.

    It'll all come together. Just keep trying new things. What doesn't work today, may work in a week or two, or three. I got such great advice from the good people on this board!

    Three weeks and one day after the end of rads, I started tasting again. I was so happy for a few minutes, until I discovered that the flavors were off. Like you, I tasted mostly the salt. Water tasted salty as well, but that was far better than the taste the week before, when it tasted like olive oil! Gradually, things are changing. This week marks my 17th week post rads and I am still trying different foods. One thing that has helped me with stinging that can come with some red sauces, is Miracle Fruit, which is sold online. You dissolve a tablet on your tongue before you eat. I don't take it for more mildly-flavored foods, because then I barely taste them. I've found that I love rice and beans, although no cajun spices yet. I trickle olive oil over the whole thing, and it really helps to get it down, since I have little saliva. Things with sauces are best for that reason. I can only dream of steak. Chicken is too hard to swallow, unless it's cut into tiny, tiny pieces and drenched in sauce. This week I tried a very mild chili and enjoyed several tablespoons of that. Just about two weeks ago, I would taste whatever I was trying to eat, only to have the taste disappear after a few fork/spoonfuls. That was frustrating. This week the flavor sticks around. Baby steps...  

  • kenwprice
    kenwprice Member Posts: 4
    dw195 said:

    Stinging Tongue

    Anyone else have a stinging tongue? I have some taste left but some things sting like crazy, bananas sting :-( I don't know if it's the radiation, Erbitux or Thrush. The Thrush is almost cleared up but the stinging remains. Anyone else have this? I started week 5 yesterday... Countdown is on :)

    Don

    stinging tongue

    I am 8 months post, and yes, it hurts like all get out. No salive glands yet either, so on meds for that to try and make them work a little.  I didn't have surgery, just rad and cisplatin over 6 weeks.  Does anyone else have / had this issue?