taste buds after radiation

slick52
slick52 Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
My radiation treatments were over last tuesday.
Does anyone know how long it generally lakes to get tasts buds back?
This id my first time on here.
«13

Comments

  • slickwilly
    slickwilly Member Posts: 334 Member
    Taste buds
    Hi and welcome to the discussion boards slick52. Did you have radiation to your head, neck, face ect? What type of cancer did you have? How much chemo? I am sure someone will answer if we know what you have been through. In my case I had 25 radiation treatments to the right side of my face. I lost half my taste buds, saliva glands and have scar tissue in my right sinus. This was 6 years ago and nothing is going to return. But the good news is that I am still alive. I just eat spicy food and pizza with peppers so I can taste it. Anyway if we have a bit more information I am sure someone can help a little better. Slickwilly
  • hunpot
    hunpot Member Posts: 90 Member

    Taste buds
    Hi and welcome to the discussion boards slick52. Did you have radiation to your head, neck, face ect? What type of cancer did you have? How much chemo? I am sure someone will answer if we know what you have been through. In my case I had 25 radiation treatments to the right side of my face. I lost half my taste buds, saliva glands and have scar tissue in my right sinus. This was 6 years ago and nothing is going to return. But the good news is that I am still alive. I just eat spicy food and pizza with peppers so I can taste it. Anyway if we have a bit more information I am sure someone can help a little better. Slickwilly

    tastey buds
    mom had radiation to neck had SCC to throat she got her taste buds back in about 3 months some get theirs back others do not hopefully you will get yours back if not like slikwilly says youll find different things to taste along the way, best wishes
  • RoseEm
    RoseEm Member Posts: 32

    Taste buds
    Hi and welcome to the discussion boards slick52. Did you have radiation to your head, neck, face ect? What type of cancer did you have? How much chemo? I am sure someone will answer if we know what you have been through. In my case I had 25 radiation treatments to the right side of my face. I lost half my taste buds, saliva glands and have scar tissue in my right sinus. This was 6 years ago and nothing is going to return. But the good news is that I am still alive. I just eat spicy food and pizza with peppers so I can taste it. Anyway if we have a bit more information I am sure someone can help a little better. Slickwilly

    My experience - 14 months after radiation
    I had 38 daily radiation treatments to my neck, throat. High doses. I finished a year ago February and while some of my taste has returned, my tongue seems to have been permanently affected. I cannot tolerate any kind of spice at all - even mild black pepper used sparingly. My doctor tells me to give it more time, but (and I really don't mean to be a "downer" here) after you try and try and try to eat what were once your favorite foods and can't, well I just don't try as much. So, my eating is really more like taking medicine 5 times a day. Yogurt, some cereals, Ensure, Boost, egg salad, cheesecake (my favorite), that's about it. My throat muscles were damaged, so that changes my situation from yours.

    I've talked with people at my radiologist's office and most seem to have their taste come back within a year.

    I guess what I'm saying is, "Do what I suggest and not as I do!" Keep trying. I used to hate the texture of cheesecake and now it's my super-treat, so things DO CHANGE.

    Good luck - keep trying!
  • slevtov
    slevtov Member Posts: 5
    How Long for Taste Buds to Return
    My husband had the full course of radiation treatment, as well as chemotherapy, in 2004--five years ago--for squamous cell carcinoma of the tonsil that had spread to surrounding areas.

    His doctors told him he would get back at least some of his sense of taste, as well as more of the nearly obliterated salivary gland function (which also affects taste). Now, five years later, he realizes that, at least in his case, none of those functions has or is ever likely to return. He cannot differentiate between sweet, salty, bitter, sour, etc. Foods that he once loved, like chocolate, grapes, and roast beef, are no longer enjoyable. Some textures and consistencies are better for him, so that buttery or soupy things are better, while dry foods are nearly impossible. He cannot tolerate cold foods or drinks, nor anything acidic or hot (in the sense of peppery). The only beverage he tolerates is warm to hot water, which he carries around with him all the time, to keep his mouth moist.

    His sense of smell is still excellent and unaffected, so at least that helps a little.

    Sorry to be discouraging, but it gets pretty frustrating, waiting around for your sense of taste to return, when, in fact, it never will.

    Short of stem cell replacement for the taste buds, it would be hard to imagine anything's changing this unfortunate outcome.

    On the other hand, he is very much alive, with no metastases anywhere, according to all of the PET/CT scans. (Incidentally, following his radiation and chemotherapy, he had immunotherapy done at Hadassah Hospital in Israel. It was based on lymphocytes from a sibling. And that may be the explanation as to why the cancer has not returned, despite the dismal statistics on stage 4 head and neck cancers).
  • slickwilly
    slickwilly Member Posts: 334 Member
    slevtov said:

    How Long for Taste Buds to Return
    My husband had the full course of radiation treatment, as well as chemotherapy, in 2004--five years ago--for squamous cell carcinoma of the tonsil that had spread to surrounding areas.

    His doctors told him he would get back at least some of his sense of taste, as well as more of the nearly obliterated salivary gland function (which also affects taste). Now, five years later, he realizes that, at least in his case, none of those functions has or is ever likely to return. He cannot differentiate between sweet, salty, bitter, sour, etc. Foods that he once loved, like chocolate, grapes, and roast beef, are no longer enjoyable. Some textures and consistencies are better for him, so that buttery or soupy things are better, while dry foods are nearly impossible. He cannot tolerate cold foods or drinks, nor anything acidic or hot (in the sense of peppery). The only beverage he tolerates is warm to hot water, which he carries around with him all the time, to keep his mouth moist.

    His sense of smell is still excellent and unaffected, so at least that helps a little.

    Sorry to be discouraging, but it gets pretty frustrating, waiting around for your sense of taste to return, when, in fact, it never will.

    Short of stem cell replacement for the taste buds, it would be hard to imagine anything's changing this unfortunate outcome.

    On the other hand, he is very much alive, with no metastases anywhere, according to all of the PET/CT scans. (Incidentally, following his radiation and chemotherapy, he had immunotherapy done at Hadassah Hospital in Israel. It was based on lymphocytes from a sibling. And that may be the explanation as to why the cancer has not returned, despite the dismal statistics on stage 4 head and neck cancers).

    slevtov
    I am sorry that your husband has to deal with the issues of saliva and taste bud loss. I lost about half of my saliva glands and taste buds. At least my radiation doctor didn't pull any punches and told me what to expect. In some cases individuals are lucky as they might not have gotten as much chemo or radiation. Or their mouth piece might of done its job by not allowing the radiation to hit the glands. But 25 shots of radiation to my face pretty well took those options off the table. Like your husband I am glad to be alive. We are quite opposite in our eating though as I tend to lean towards the spicy foods that I can taste. The real problem is the constant fluid intake that makes a person make regular runs to the restroom. And the pasty feeling that does not make a person want to run around kissing women. Not that my wife would like that anyway. I thank God that someone invented Biotene Mouthwash as it allows me to sleep through the night. Before finding it I would wake up dried out and caughing. Best wishes to you and your husband and I hope you have a great summer. Slickwilly
  • teddi
    teddi Member Posts: 1

    slevtov
    I am sorry that your husband has to deal with the issues of saliva and taste bud loss. I lost about half of my saliva glands and taste buds. At least my radiation doctor didn't pull any punches and told me what to expect. In some cases individuals are lucky as they might not have gotten as much chemo or radiation. Or their mouth piece might of done its job by not allowing the radiation to hit the glands. But 25 shots of radiation to my face pretty well took those options off the table. Like your husband I am glad to be alive. We are quite opposite in our eating though as I tend to lean towards the spicy foods that I can taste. The real problem is the constant fluid intake that makes a person make regular runs to the restroom. And the pasty feeling that does not make a person want to run around kissing women. Not that my wife would like that anyway. I thank God that someone invented Biotene Mouthwash as it allows me to sleep through the night. Before finding it I would wake up dried out and caughing. Best wishes to you and your husband and I hope you have a great summer. Slickwilly

    Getting taste back after radiation
    Hello everyone,
    This is my first visit. My mother (86) just finished 37 radiation treatments to her neck and throat and did pretty well.
    She still can't taste anything- except for mustard! and maybe a little chocolate.
    Not eating although she can still swallow, she is still getting 4-5 tube feedings of ensure/boost a day.
    I know that her taste may never come back completely but I was wondering if anyone had tips about what to try, for inspiration and etc.

    She is grateful to be alive but she sure would like to taste something- just wondering if there are any particular foods that she might be able to taste.
    I know that pepper and spicy foods are not appealing to her.
    Many thanks! My best wishes to all the survivors and caretakers out there.
    Teddi
  • victor53
    victor53 Member Posts: 97
    Im 7 months past treatment.
    Im 7 months past treatment. Things that taste like they used to, and taste good for me , are cheese omellettes with american , vermont cedder and mozzarela mixed together a slice of each. Dunkin donuts coffee , i used to be a coffee snob now only dunkin.
    Nathans hot dogs plain without mustard. Mashed potatoes with I Cant Believe Its not Butter. I would always eat only butter now, The I Cant believe it stuff tastes 1000 times better. Cambells Healthy request chicken and rice soups i add extra sliced chicken from the deli all crumbled up and extra veggies. Its out of season but Eggnog was what saved my life i was lucky to go thru treatment during Eggnog season nothing puts on weight like eggnog. I drink alot of milk with everything. I had a sweet tooth but not any more.
    All thou i had a piece of tiramasou (sp?) that wasnt bad i think because it had a coffee flavor it was ok.
    Plantains fried in the pan with the I cant belive its not butter stuff is my new found eatable enjoyable flavor.
    I still keep wanting to get some of the stuff called Miracle Fruit and try it.
  • Tricia05
    Tricia05 Member Posts: 2
    hi Slick
    Seems like everyone is different with regard to taste buds. I finished treatment in Nov 05 for SCC of the nasal septum. I had surgery, radiation and chemo. I lost my taste with most foods, except hot curries, Thai and Indian, Sweet and Sour Chinese and anything else that is sweet or sour and chocolate. I live in the UK where the national dish is Indian curries so I am a lucky bunny. At first I was shocked but now its kewl, most of the stuff i cant taste is boring anyway, so no loss. Hey you work with what you have don't ya. I am so lucky to be here and enjoy everyday. I have put on a stone and a half in weight, thats about 18lbs lol. But I was skinny to start with, but I would still like to lose some. I doubt I will cos I LUV chocolate now. Other than that my diet is healthy. Good luck with treatment and your taste buds. Tricia
  • abdulrauf_hafeez
    abdulrauf_hafeez Member Posts: 15 Member
    zinc supplement
    I am three weeks past treatment. Can't taste sweet or salt. But can taste things like bread (homemade bread, roti, naan), potato fries and eggs. I just talked to my nutritionist. She told me that taking zinc supplements helps restore taste buds. She told me to take a 50mg pill thrice a day for up to 2 months (and no more). Overdosing on zinc can be toxic.

    I found a helpful discussion thread on this forum.

    http://csn.cancer.org/node/156857
  • jkinobay
    jkinobay Member Posts: 298 Member

    zinc supplement
    I am three weeks past treatment. Can't taste sweet or salt. But can taste things like bread (homemade bread, roti, naan), potato fries and eggs. I just talked to my nutritionist. She told me that taking zinc supplements helps restore taste buds. She told me to take a 50mg pill thrice a day for up to 2 months (and no more). Overdosing on zinc can be toxic.

    I found a helpful discussion thread on this forum.

    http://csn.cancer.org/node/156857

    Zinc is a heavy metal..........careful with Chemo
    I too took Zinc post treatments but gave it a month or so to get as much of the Cisplatin (liquid Platinum) out of my system. My Dentist prescibed it. I think it helped a lot. I am about 21 months post-treatments and my tast has recovered to about 95%. Some things taste different than they used to but not bad. My saliva too has recovered well. I am very fortunate and grateful for that.

    JK
  • abdulrauf_hafeez
    abdulrauf_hafeez Member Posts: 15 Member

    zinc supplement
    I am three weeks past treatment. Can't taste sweet or salt. But can taste things like bread (homemade bread, roti, naan), potato fries and eggs. I just talked to my nutritionist. She told me that taking zinc supplements helps restore taste buds. She told me to take a 50mg pill thrice a day for up to 2 months (and no more). Overdosing on zinc can be toxic.

    I found a helpful discussion thread on this forum.

    http://csn.cancer.org/node/156857

    it works!
    Wow, I have been on zinc for 10 days now and I can see and feel some taste buds appearing on my tongue. My tongue surface was completely flat and smooth. Now I can see tiny bumps appearing in the middle of it. The tip and sides are still lacking though. I can't taste sweet yet, but can taste other (salty / sour) foods much better than before.
  • jkinobay
    jkinobay Member Posts: 298 Member

    it works!
    Wow, I have been on zinc for 10 days now and I can see and feel some taste buds appearing on my tongue. My tongue surface was completely flat and smooth. Now I can see tiny bumps appearing in the middle of it. The tip and sides are still lacking though. I can't taste sweet yet, but can taste other (salty / sour) foods much better than before.

    Great news
    Try watermelon. I never liked it before treatments but now like it better. One nurse told me that watermelon has been known to help revive tastebuds. Not sure, but worth a try.

    Hang in there, I am at almost 2 years out and find my taste is still improving though slightly. It is a long, long process.

    JK
  • abdulrauf_hafeez
    abdulrauf_hafeez Member Posts: 15 Member
    jkinobay said:

    Great news
    Try watermelon. I never liked it before treatments but now like it better. One nurse told me that watermelon has been known to help revive tastebuds. Not sure, but worth a try.

    Hang in there, I am at almost 2 years out and find my taste is still improving though slightly. It is a long, long process.

    JK

    Thanks JK. I love
    Thanks JK. I love watermelons, esp cold ones. As luck would have it, my wife just cut open a fresh watermelon. Though I can't taste much of the sweetness, I still like the texture. Guess what I'm eating now.
  • diamond-n-the-rough
    diamond-n-the-rough Member Posts: 14
    teddi said:

    Getting taste back after radiation
    Hello everyone,
    This is my first visit. My mother (86) just finished 37 radiation treatments to her neck and throat and did pretty well.
    She still can't taste anything- except for mustard! and maybe a little chocolate.
    Not eating although she can still swallow, she is still getting 4-5 tube feedings of ensure/boost a day.
    I know that her taste may never come back completely but I was wondering if anyone had tips about what to try, for inspiration and etc.

    She is grateful to be alive but she sure would like to taste something- just wondering if there are any particular foods that she might be able to taste.
    I know that pepper and spicy foods are not appealing to her.
    Many thanks! My best wishes to all the survivors and caretakers out there.
    Teddi

    Getting taste back after radiation
    teddi: HI my name is JERRY, IN 1999 i began my radiation & chemo treatment on my head and neck.i received radiation dosages twice a day ,once at 7:30 AM and again at 3:30PM. the CANCER CENTER was 26 miles away, and i drove everyday before and after treatment. ON two occassions i pasted out for about 2 mintues, but when I came to my vehicle was still in the road ,about two lanes from the nearest car. THE first thing i say was thank you LORD. SO after completing my treatment i was bed ridden with, no working sweat or saliva glands, dry mouth , a very sore thorat, no tastebuds and four lesions on my brain. I failed to eat or drink any fluids any thing that i ate or drank came back up in less than 1 min. SO for nine month the LORD feed me with GRACE,MERCY, LOVE,CARING AND HOPE ! but as time past i consumed my first meal. IT was egg drop soup, I ate this for 4 days to this day i hate food !
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    jkinobay said:

    Great news
    Try watermelon. I never liked it before treatments but now like it better. One nurse told me that watermelon has been known to help revive tastebuds. Not sure, but worth a try.

    Hang in there, I am at almost 2 years out and find my taste is still improving though slightly. It is a long, long process.

    JK

    Encouraging
    Hey JK,

    I am glad you are out there. I read your profile and your diagnonsis is so similar to my husband. He has stage IV SCC to his right tonsil. We are starting treatment on July 30, He will have 35 rad with three cysplatin over the course. It is encouraging to hear you are doing well. I know he will be okay. He is 55 and also is HPV-16 positive. Any inside info is helpful. I read your PEG 101 and we will have that put in before treatment starts, and that was helpful also. Thank you, God Bless.

    Donna
  • jkinobay
    jkinobay Member Posts: 298 Member

    Encouraging
    Hey JK,

    I am glad you are out there. I read your profile and your diagnonsis is so similar to my husband. He has stage IV SCC to his right tonsil. We are starting treatment on July 30, He will have 35 rad with three cysplatin over the course. It is encouraging to hear you are doing well. I know he will be okay. He is 55 and also is HPV-16 positive. Any inside info is helpful. I read your PEG 101 and we will have that put in before treatment starts, and that was helpful also. Thank you, God Bless.

    Donna

    Glad to help
    But, sorry to find out it is needed. I know when I was first diagnosed and after my first "Pity Party", I was elated to find this Board. So many knowledgeable, experienced, caring people. They really made a difference for me back then and continue to do so now.

    As an additional suggestion, did you see an old post of mine about oral care? If not, I will locate it and repost.

    God Bless and hang in there.............my best to your Husband. Things will get better over time.

    JK

    PS: my wife's name is Donna, so he is in excellent hands. I would not be here without "my Donna".
  • jkinobay
    jkinobay Member Posts: 298 Member

    Encouraging
    Hey JK,

    I am glad you are out there. I read your profile and your diagnonsis is so similar to my husband. He has stage IV SCC to his right tonsil. We are starting treatment on July 30, He will have 35 rad with three cysplatin over the course. It is encouraging to hear you are doing well. I know he will be okay. He is 55 and also is HPV-16 positive. Any inside info is helpful. I read your PEG 101 and we will have that put in before treatment starts, and that was helpful also. Thank you, God Bless.

    Donna

    A recent post for Oral Care and other info
    If you have not read it, cut and paste in your browser ..

    http://csn.cancer.org/node/171697
  • pookie834
    pookie834 Member Posts: 3
    Hello
    I'm new here but my radiation was over 7/27/09 a seven week treatment each and every morning,I was asking my self the same thing how long before taste buds come back..some told me a year but said each is different and now as of 8/12/09 I finally getting taste back finally. Still a few things can't taste fully, but this morning made me a cheese omelet and a cup of coffee and wow could taste it and felt like it was my first real cup of coffee in about four weeks.So it is coming back. I was diagnosed with throat cancer so it was mostly hard to eat because of the sore throat and swelling. Starting to also feeling more energy to now. I have a feeding tube which helps a lot also. But any questions please feel free to ask k....pookie
  • Helaine62
    Helaine62 Member Posts: 3
    taste Buds
    I finished my 33 treatments June 13th and I still do not have my taste buds back and still have the dry mouth. I was told by my surgeon and ocologist that it could be quite a while. I hate my g tube and I want it out. I wish I could tell you that I have it back. Sorry. What I can eat Is; Cream of wheat hot cereal w/sugar, milk shakes made with whole milk, carnation instant breakfast, yogart, ice and strawberries or bananas. Blend it up and it tastes good. I also eat ice cream cups, vanilla pudding, apple sauce and tomato soup. My husband has been making all kinds of food for me to try and all I do is gag and cry, I cannot eat it. I do not know about the rest of you but I have lost a lot of weight and I am tall. This bothers me more than anything. I still do not have my strength back and I do not sleep through the night. The Doctor's say that I am rushing everything.....The days are long especially since I am used to go, go, going all the time. I just want to eat and gain weight and get my strength back to the way it is. Already have had two monthly check-ups:one with my surgeon and one with my ocologist. My surgeon put the tube down the nose and said everything looks good. Oh by the way. I had a golf ball size lump pop out on my neck and than it disappeared. They found it with one squamous cell in it. They put me through the ringer with all the tests and found that I have no origin. Only 5% of people have no origin. It took the doctors months to fiqure out what they were going to do with me....finally it was radiation. That part of the journey is over, now the recovering part. Would lov to hear from anyone. I love reading what you wrote and some of it is helpful. Take care everyone. PS: I love cantalope also.
  • mentn
    mentn Member Posts: 4
    Taste buds
    Is't it great to have so many helpful SURVIVORS on this board. I am three years post radiation today party at my house tonite!! I had 30 RAD treatment for SCC Right Tonsil could only taste
    spicy chinese food the first three months tried to follow doc orders and get lots of protein
    Carnation Instant Breadfast and Smoothies felt good going down withing 6 months most taste
    were back except for sweet flavors then about 18 months out I tasted chocolate for the first time I rem. that day well. Now 3 years later I have not only gained back the 27 pounds I
    lost but 10 extra but it is a joy to be healthy and have taste buds. Good luck to you all.