I want my mouth back!

cindycflynn
cindycflynn Member Posts: 1,132 Member
edited March 2014 in Breast Cancer #1
I know I could have a lot more to complain about, and am lucky that this seems to be the worst of my side effects so far (except for some lovely constipation which I will spare you the details of), but I'm only into a week of this chemo and the way my mouth feels is already driving me crazy!

Thanks to you ladies that have already gone through this, I was expecting my taste buds to change, which they have, but what I wasn't adequately prepared for is the way my mouth feels. It feels like it's just slowly disintegrating, and the whole inside surface of my mouth is rough and chalky, not to mention just tasting awful. I bought some Biotene, which helps a very little bit, but the only time my mouth feels somewhat normal is when I'm eating, and I'm still discovering what foods actually taste OK and which ones I'm just going to have to learn to live without until this goes away. For me, peanuts, potato chips, meat, and salad with ranch dressing taste pretty normal (oh, and chocolate and ice cream - THANK GOD!), but anything sour or spicy just tastes wrong, cheese is yucky, and I haven't foud a fruit that tastes right yet.

I know I'll survive, but just had to get that out - Thanks for listening!

Comments

  • Sharon40
    Sharon40 Member Posts: 93
    #2
    It was awful for me as well
    I totally understand! I have finished Chemo (6weeks ago) and I just finally got my mouth back in order! It does come back, it just takes time! Enjoy what you can! Sharon
  • carkris
    carkris Member Posts: 4,553 Member
    #3
    Sharon40 said:

    It was awful for me as well
    I totally understand! I have finished Chemo (6weeks ago) and I just finally got my mouth back in order! It does come back, it just takes time! Enjoy what you can! Sharon

    My mouth felt that way in
    My mouth felt that way in the beginning, now much better on taxol. I really dont enjoy any food. some foods I just tolerate better than others, like lipton soup, fish. pasta, hate all sweets. good thing/bad thing I have lost alot of weight. I was thinking ironically since my 50 th birthday is soon, that I would be overweight for my big birthday. Guess not, didint want to lose it this way. Some people write by using rinses from the very beginning this doesnt happen. and eating /nutrition is important.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #4
    carkris said:

    My mouth felt that way in
    My mouth felt that way in the beginning, now much better on taxol. I really dont enjoy any food. some foods I just tolerate better than others, like lipton soup, fish. pasta, hate all sweets. good thing/bad thing I have lost alot of weight. I was thinking ironically since my 50 th birthday is soon, that I would be overweight for my big birthday. Guess not, didint want to lose it this way. Some people write by using rinses from the very beginning this doesnt happen. and eating /nutrition is important.

    Sorry
    I am sorry Cindy. I hope it gets easier and better for you.

    Hugs, Diane ♥
  • Cat64
    Cat64 Member Posts: 1,192
    #5
    SisC
    I soooo remember the frustration I had trying to find something good to eat that I could taste! It is definetely trial & error. The only things I could taste was cole-slaw, pickles, & a little strawberry. I had alot of chocolate Boosts to keep the counts up. Dairy-forget it. Oh how I would of loved to indulge on some ice-cream (let alone chocolate) or a bowl of cereal..however, it doesn't take long for your mouth to get back to normal is the good news.
    I have been glued to a book my Nutritionist recommended to me called "Cancer-Fight it with the Blood Type Diet by Dr. Peter J.D'Adamo. It is an individualized plan for preventing and treating cancer. When I first met with the Nutritionist, she first asked me, after I told her why I was there-what my blood type was. She was happy to hear my type. She gave me a list of food do's & don'ts. Until I started this book, I didn't realize how important this list was. One of my resolutions is to eat more healthy. This is one of my places to start.
    My ear is always here!
    Merry Christmas to you & yours
    ♥ SisCat
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #6
    Cat64 said:

    SisC
    I soooo remember the frustration I had trying to find something good to eat that I could taste! It is definetely trial & error. The only things I could taste was cole-slaw, pickles, & a little strawberry. I had alot of chocolate Boosts to keep the counts up. Dairy-forget it. Oh how I would of loved to indulge on some ice-cream (let alone chocolate) or a bowl of cereal..however, it doesn't take long for your mouth to get back to normal is the good news.
    I have been glued to a book my Nutritionist recommended to me called "Cancer-Fight it with the Blood Type Diet by Dr. Peter J.D'Adamo. It is an individualized plan for preventing and treating cancer. When I first met with the Nutritionist, she first asked me, after I told her why I was there-what my blood type was. She was happy to hear my type. She gave me a list of food do's & don'ts. Until I started this book, I didn't realize how important this list was. One of my resolutions is to eat more healthy. This is one of my places to start.
    My ear is always here!
    Merry Christmas to you & yours
    ♥ SisCat

    I know this has to be
    I know this has to be upsetting and hurt a lot. I am sorry Cindy.



    Debby
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #7
    Cindy,
    you've got dry mouth and your taste buds are fried which(at least for me back then)is the reason your mouth feels that way. Just try to keep up with keeping your mouth clean. I'm glad that you are still able to eat all of that-so you are still able to get some nourishment!Chocolate believe it or not was too salty for me!But I loved yogurt,tuna fish,and mixed nuts-lightly salted..For me,not being able to taste things right was the worst. After the initial shock,I could have cared less about the lack of hair.
    I hope that things get better for you-either that or that your tolerance level goes up!!
  • TLynn0102
    TLynn0102 Member Posts: 86
    #8
    outdoorgirl said:

    Cindy,
    you've got dry mouth and your taste buds are fried which(at least for me back then)is the reason your mouth feels that way. Just try to keep up with keeping your mouth clean. I'm glad that you are still able to eat all of that-so you are still able to get some nourishment!Chocolate believe it or not was too salty for me!But I loved yogurt,tuna fish,and mixed nuts-lightly salted..For me,not being able to taste things right was the worst. After the initial shock,I could have cared less about the lack of hair.
    I hope that things get better for you-either that or that your tolerance level goes up!!

    Taste Buds
    I went through this same thing too. It drove me nuts. I rinsed with warm salt water everyday and am not really sure if it helped or not but it just became routine. I drank a lot of Vitamin drinks because that was the only thing I could taste and it was low in salt. I remember last winter I made a pot of chili for my family and tasted it as I went along. To me it was fine, very little flavor but I thought it was good. The story was different on the other side of the table as I watched everyone's faces turn red, sweat roll down their foreheads and the abrupt race to the Rolaids! That was a good indication that I should not cook anything spicy for the remainder of the year! I did notice that my taste buds were the first things that woke up after the treatments ended and food was so wonderful from that point forward! Hang in there it is a temporary symptom.
  • teresa41
    teresa41 Member Posts: 471
    #9
    TLynn0102 said:

    Taste Buds
    I went through this same thing too. It drove me nuts. I rinsed with warm salt water everyday and am not really sure if it helped or not but it just became routine. I drank a lot of Vitamin drinks because that was the only thing I could taste and it was low in salt. I remember last winter I made a pot of chili for my family and tasted it as I went along. To me it was fine, very little flavor but I thought it was good. The story was different on the other side of the table as I watched everyone's faces turn red, sweat roll down their foreheads and the abrupt race to the Rolaids! That was a good indication that I should not cook anything spicy for the remainder of the year! I did notice that my taste buds were the first things that woke up after the treatments ended and food was so wonderful from that point forward! Hang in there it is a temporary symptom.

    same problem
    i had the same problem also, i drank ginger ale a lot and ate ice it seemed to help me.



    good luck to you it will get better..

    teresa
  • Sam726
    Sam726 Member Posts: 233
    #10
    I had the same problem after first treatment
    I bought some tea tree oil..put a few drops in about 3 oz of water and swish with it a few times a day...helps keep mouth clean. Smells bad, but hardly any taste. Will help keep mouth sores away too!
    Good luck..
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #11
    Sam726 said:

    I had the same problem after first treatment
    I bought some tea tree oil..put a few drops in about 3 oz of water and swish with it a few times a day...helps keep mouth clean. Smells bad, but hardly any taste. Will help keep mouth sores away too!
    Good luck..

    Thanks for all the tips!
    I'll definitely try some of these out

    Went out with the family to an Italian restaurant last night and the only thing that tasted good was the fried calamari appetizer. Came home and had some ice cream for dessert.

    Oh well, this too, shall pass!

    Hope you all have a wonderful Christmas!
  • carkris
    carkris Member Posts: 4,553 Member
    #12
    cindycflynn said:

    Thanks for all the tips!
    I'll definitely try some of these out

    Went out with the family to an Italian restaurant last night and the only thing that tasted good was the fried calamari appetizer. Came home and had some ice cream for dessert.

    Oh well, this too, shall pass!

    Hope you all have a wonderful Christmas!

    I am going for my 9th of 12
    I am going for my 9th of 12 taxols and I noticed my appetite is improving. i still dont eat a ton, but more things are appealing. I wish my hair would start growing back.!
  • Lynda53
    Lynda53 Member Posts: 210
    #13
    I've used a mouth rinse
    I liked a listerine smart rinse the best.
    It could have been in my head but it seemed to help.

    Peace
  • dmc_emmy
    dmc_emmy Member Posts: 549
    #14
    Lynda53 said:

    I've used a mouth rinse
    I liked a listerine smart rinse the best.
    It could have been in my head but it seemed to help.

    Peace

    Chemo does play havac on your mouth and taste buds...
    but what I found worked, fairly well, was to suck on ice during chemo. It helped to reduce the mouth sores and, at least while at chemo, it helped me to enjoy my food. I brought a "picnic" lunch with me and my friend and I shared the one meal that I knew I would be able to enjoy as I waited for another chemo treatment. I did not handle chemo well at all, so I can appreciate the trials of going through it.

    The ice was only a temporary solution, but it was better than nothing. Wish you well, this too shall pass and, though you will never forget it, it will be a distant memory in time.
    dmc
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #15
    Getting better
    For the past few days I've been rinsing with warm water with baking soda and salt dissolved in it, and it seems to be helping.

    A lot of things still taste wrong, but at least my mouth doesn't taste as yucky all of the time, and the texture is much improved. I'm not sure if it's the rinse or just the passage of time, but I'm going to keep using it, and with my next chemo I'll just start right away and hope that my mouth just doesn't get as bad.

    Thanks so much to all of you for your suggestions and comments!
  • pgrace35
    pgrace35 Member Posts: 122
    #16
    Yucky
    That was one of my biggest complaints....that everything tasted awful. My mouth felt like I poured scalding hot water into it, and finding anything palitable was impossible. Ice cream was about the only thing that "sort" of tasted good. I could tolerate the bone pain, headaches,sore throat, hot flashes, night sweats etc.etc...but the taste thing got really old.
    Hang in there, it seems forever but you be finished up before you know it.

    Happy New Year!

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