Driving me crazy.

Tonsil Dad
Tonsil Dad Member Posts: 488
in Head and Neck Cancer #1
I know its only 9 rad sessions in, but the complete loss of tase is driving me potty. I can
Still eat as my thoat is not to sore, but I've got no desire to eat as everything tastes like
s#@t. I can still smell all the wonderful flavors as the food goes in my mouth but then it
Ends there. Any ideas as to how long this nightmare lasts, I am coping with any other little
Side effect, but this is really hard as I can still eat. BTW it has improved the taste of my wife's
Cooking.... (Hope she dosen't read my post). I'm only joking....LOL.

EVEN WATER TASTES NASTY.

God bless.

Tonsil Dad
Dan.

Comments

  • nwasen
    nwasen Member Posts: 235 Member
    #2
    no taste!
    Hang in there Dan....it could be awhile. I lost my taste buds at about 6 weeks. A friend of a friend made homemade manicotti. Smelled so good and tasted like.............dirt. I completely lost all taste until a few months after treatments ended. And yes, even water tasted horrible.
    I am 1 year and 3 months out and everything and I mean everything tastes wonderful
    You tell your friends they take tasting and swallowing for granted but until you have walked in our shoes, it is hard to grasp.
    Once my buds started coming back I would taste other people's food so I wasn't wasting money on food that I wouldn't eat.
    good luck and keep us posted and do keep calm and carry on
    Nancy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Hard To Say...
    You just take in calories because you have to do what you have to do to get through....

    With chemo, I'd lose my taste for a week or so, different with rads though.

    It took nearly two years to completely regain my taste, but I did start having taste back a few weeks/months after rads ended. But usually I had to use so much water that everything had little flavor anyways... Like you said, even water taste like sweat.

    It's just part of the process...

    I have complete taste now and nearly all saliva (minus a little at night during sleep).

    JG
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    On eating
    Since you have no problem swallowing, I would first encourage you to keep eating, whether you like what you are tasting or not.

    In my case, swallowing was a problem physically, so I had other issues.

    But I learned that taste is minimally comprised of taste (buds), smell, and expectation.

    You possess, it sounds like, two of the three.

    I would suggest you try things you didn't use to like, that you try things you have never tried before (eliminating expectation as a culprit). I have discovered quite by accident that I enjoy a lot of foods that I never would have liked before.

    With Nancy's idea that you taste others' food first, in my experience people (including close family members :)) found me eventually to be a pain in the butt even for just smelling their food. I would advise instead accepting the fact that you will be eating smaller portions both home and away and that some of them will be 'doable' and thus eligible for doggie bags or small containers (I save small side dish containers from a popular KY chicken joint for that very purpose), while others are less painfully discarded, in their smallness, than they would be in larger quantities.

    Too, the larger quantites compel you to try to down the lot, perhaps making you feel you have failed if you do not succeed, while the alternative downing of an entire dish of smaller amounts is satisfying.

    Just a thought.

    Take care,

    Joe
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    Just make sure
    you get enough calories. I had the problem that when food lost its taste, I tended to feel full very quickly,and my caloric intake dropped way down. If this is a problem for you, supplement with liquid calories. Ensure plus whatever you want to add to it. I add all kinds of blender-ready foods. You can easily get 700 plus calories in 16 ounces. Just chug that down a couple of times a day, and it will go a long way to getting your calories to where you aren't dropping weight.

    Pat
  • osmotar
    osmotar Member Posts: 1,006
    #6
    Keep up
    Keep up the calories and hydraration. I had to laugh at the waater comment..same here the only water I could drink thru the whole process is Dasani...everthing else was nasty.

    Linda
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #7
    Ha, I recall the water that tasted like sweat...
    Eeek. I never lost my sense of smell. Everything smelled wonderful, but putting it in my mouth was like trying to chew parafin wax... except way more painful.

    My taste started coming back very quickly after treatment. I think it was partly because my sense of smell never left.

    Deb
  • hislove40
    hislove40 Member Posts: 51
    #8
    My taste buds are going too
    Unfortunately, I don't have any advice - just to tell you I am right there with ya. I talked to the doctor last night after rad #6 because I couldn't believe my taste buds were going - not gone as I can still taste but everything taste weird and I feel like my tongue is numb for lack of a better explanation. This is round 2 of rads as 6 weeks of rad on my temple was a piece of cake. This is because the cancer moved to my lymph node so it's all much more invasive with that awful mask. He said aiming at the lymph areas makes it much more of an ordeal. I'm getting some good advice from your posting so thank you :). Hang in there - we'll get through this :)

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