Taste Buds - when will they return!?

Ramseur7
Ramseur7 Member Posts: 5
edited March 2014 in Head and Neck Cancer #1
My husband just completed 6 weeks of radiation (42 treatments) for squamous cell carcinoma, base of tongue. He did well during treatment as he only lost 8 lbs., did not have a feeding tube and never took any narcotic pain medication. He is taking non-narcotic pain meds. His biggest problem is severe mucus, throat pain and no taste. He has an appetite and is so hungry. He is drinking boost plus shakes and broth. His throat hurts too bad to eat anything other than that for now, but if he could just TASTE he feels that his emotional state would be much better. I know it differs for everyone, but on average, can anyone share how long it took for them? My husband is getting a little depressed, but tries to keep his focus on God to help him through this. Any advice is greatly appeciated.
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Comments

  • patupatme
    patupatme Member Posts: 2
    #2
    It may seem like forever, but it is in fact (at least for me) about 4 to 6 weeks. I can understand your frustration totally. Just hang in there and you will slowly begin to taste things again. In my case (tonsillar) my taste buds returned completely. However, I was not as fortunante with my salivary function. I wish you well.
  • sita
    sita Member Posts: 2
    #3
    Hang in there, you're almost done. It took me about 6 weeks. Be prepared for things to taste a little different - until you start to remember what things taste like. I was shattered to find that peanut butter cups tasted like chili, but only in the beginning!
  • huni
    huni Member Posts: 2
    #4
    Can he taste anything? My man went thru basically the same thing and lost his taste buds and the dr. will tell you "it depends". If there are things he can taste ask what part of the tongue he can taste them on. Or what does it taste like...the tongue has (I think) 7 taste zones. Then concentrate on those tastes. Mine, of course, could taste steak and lobster....nothing cheap!!! lol....I didn't care. That's what he got.

    In some cases the foods loved the most can taste like metal or nothing. Just keep trying....I did "power shakes" of ice cream, milk or cream, chocolate syrup, yogurt, fruit, that wasn't really that acidic because it burns like hell on the new skin in the throat and boost or any hi carb/body building stuff available. The cool effect of the icecream felt good on the sore throat and got the nutrition in there. Hope this helps.
  • huni
    huni Member Posts: 2
    #5
    Sorry.....put it all in a blender and make a shake or a frappe out of it. LOL.

    another thing....if they did radiation....get some pure aloe and just slather it on the area...should have been done from the beginning. The skin will slough off but, hopefully, with the aloe will leave no scar. I went to a local health food store and got 98% pure aloe and he just put it on after every treatment...he had no scaring...get the stuff that has no cream, perfume or anything else. That's important
  • karenleung
    karenleung Member Posts: 13
    #6
    Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.
  • Ramseur7
    Ramseur7 Member Posts: 5
    #7
    huni said:

    Can he taste anything? My man went thru basically the same thing and lost his taste buds and the dr. will tell you "it depends". If there are things he can taste ask what part of the tongue he can taste them on. Or what does it taste like...the tongue has (I think) 7 taste zones. Then concentrate on those tastes. Mine, of course, could taste steak and lobster....nothing cheap!!! lol....I didn't care. That's what he got.

    In some cases the foods loved the most can taste like metal or nothing. Just keep trying....I did "power shakes" of ice cream, milk or cream, chocolate syrup, yogurt, fruit, that wasn't really that acidic because it burns like hell on the new skin in the throat and boost or any hi carb/body building stuff available. The cool effect of the icecream felt good on the sore throat and got the nutrition in there. Hope this helps.

    I thank everyone who has responded to my message. Hopefully he will have taste buds soon. It is not that he has no taste buds...things just taste terrible. Everything tastes so bad to him that sometimes if he tries something, the gag reflex sets in. He is on Boost Plus shakes made with ice cream and whole milk. Occasionally he will eat/drink chicken broth, although it does not taste good. Just this week, water has been tasting metallic and yogurt tastes like aluminum foil. I hope he can taste steak and lobster! He would love that. How could your husband swallow the steak? Wasn't that hard? Oh yeah, his skin is looking good now. He used Biafine and Emu Oil.
  • Joni62
    Joni62 Member Posts: 1
    #8
    Ramseur7 said:

    I thank everyone who has responded to my message. Hopefully he will have taste buds soon. It is not that he has no taste buds...things just taste terrible. Everything tastes so bad to him that sometimes if he tries something, the gag reflex sets in. He is on Boost Plus shakes made with ice cream and whole milk. Occasionally he will eat/drink chicken broth, although it does not taste good. Just this week, water has been tasting metallic and yogurt tastes like aluminum foil. I hope he can taste steak and lobster! He would love that. How could your husband swallow the steak? Wasn't that hard? Oh yeah, his skin is looking good now. He used Biafine and Emu Oil.

    My husband was recently diagonsed with the exact same cancer. He underwent a radical neck dissection in Feb. and will begin radiation on the 22 as well as Chemo. Reading your messages I have gained a real insight to the future and I thank you for sharing this.
  • RoyR
    RoyR Member Posts: 4
    #9
    karenleung said:

    Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

    I agree with the comment of a couple other people that the loss of saliva seems the more serious consequence than the loss of taste. Without taste you can still eat, but without saliva other problems can grow. For instance, I now have obstructive sleep apnea which is partly related to no saliva. When I do something physical for about 10 minutes, then I need to stop and get water otherwise my tongue sticking to the roof of my mouth stops me from breathing. I was given amifostine as a cytoprotectant during radiation but had an allergic reaction to the amifostine. One lesson I learned from that is that you should get anti-histamines with the amifostine. For sleep now I recommend a warm air humidifier. For no taste I have no recommendation other than what has already been said.
  • Reggie13
    Reggie13 Member Posts: 9
    #10
    Hi Ramseur7,
    I, too, was diagnosed with sqamous cell carcinoma of the base tongue in April of 2003. I had both chemo and radiation treatment for 7 weeks. My doctors said studies show that this is the best way to treat this. I did have a peg tube inserted and still have it. It's been almost 7 months since I completed my treatments. I still do not have any salivary glands or taste buds. The doctors said that they should come back but don't know when. My Faith is the only thing that keeps me going. I can relate to you in wishing that at least you had the taste buds. I, too, think I could tolerate things much better if I had them. I want to eat soooooooooooooooo bad. I know this is not the answer to your question but I just wanted you to know that someone else out there is going through exactly what you are. Sometimes it helps to know this. Please feel free to write me if you wish. With your permission, I will had you to my prayer list.
    Hang in there Buddy,
    Reggie
    (Reggie13 from CSN)
  • Reggie13
    Reggie13 Member Posts: 9
    #11
    Hello to My Fellow Survivors:
    First of all, I pray that God will continue to bless each and every one of you.

    I was diagnosed with Squamous Cell Carcinoma (Base of Tongue) April 2003.
    Here were are, March 30, 2004 after both chemo and radiation treatments, I still do not have any salivary glands, taste buds, and remain with a peg tube due to difficulty in swallowing.
    Does anyone know of a survivor who lost his/her salivary glands, only to have them return later?
    I hope and pray that there is at least one out there. This would give me so much hope. I'm afraid after 10 months I may have permanently lost my salivary glands. Only Faith keeps me from depression.
    If anyone can be of any help to anything I have said, I would greatly appreciate a reply.
    In the meantime, I will continue to add all of you to my daily prayer list.

    May God Continue to Strengthen You ALL!

    Reggie
  • justnita
    justnita Member Posts: 1
    #12
    karenleung said:

    Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

    My husband had extensive surgery to his throat, and 10 weeks of daily radiation (5days a week) in 1994. The changes he mostly noticed and continues to notice, are things taste more spicy than they actually are, including catsup (which he loves, just not as much as before) He also found that anything tart, became much more so. His taste for sweets is great and his craving for them has greatly increased. He says you just learn to adjust to the different tastes. Hope this helps some.
  • montdoug
    montdoug Member Posts: 5
    #13
    I'm approaching 4 years out after treatment end. I had Squamous cell carcinoma with unknown primary of 2 neck lymph nodes. Treatment consisted of radical neck disection, max radiation due to unknown primary, constant infusion chemo for the first and last week of chemo.
    I lost almost all taste for 6 to 8 months and every thing tasted different even then. Taste started returning slowly and continues to improve still. It was much improved by a year and a half. It has improved to the point I truly enjoy food again. It was very exciting as the tastes kept coming back and old favorites that had tasted bad started to taste good again, I'm a Mexican food junky and at first even katsup was too spicy, 4 years out and I'm eating jalapenos again . Some things changed more than others, red meat YUUUKK! ice cream tasted like frozen grease, still does(bummer), new favorites have replaced old favorites. For me prepairing a known favorite dish was at first very depressing cause I knew I was going to love it and what it was supposed to taste like but it was soooo different. Try new and unusual foods that are new to you, you don't know what they are supposed to taste like and you find things that taste good with no preconcieved notions.

    I use Oral Balance moisturizing gel for dry mouth caused by no salive glands, big help. Sorry this is so long, it's my first post here, hang in there all, it gets better!
  • rich733
    rich733 Member Posts: 1
    #14
    karenleung said:

    Well for me, I never really lost all my taste buds during or after treatment. I had 48 rounds of radiation and concurrent chemotherapy to treat my advanced stage of tonsil cancer. But some food doesn't taste the same as before especially the sweet one. No problem with the salty and bitter one. No spicy food because it burns my tongue and throat. I learn to imagine the original taste when eating food that has a different taste.Loss of taste buds is not so frustrating as loss of saliva glands in my case.

    I had sqaumus on the left lateral tongue, diagonsed in 10/02 T2 M0; on 11/20/02 underwent radical neck dissection which removed 53 lymph nodes and the large salivary gland on the left side. Also had a muscle flap from the neck flipped over to close a communication in the mouth base. The tongue was reduced by 1/3 in a hemiglossectomy. Recuperated through December, then did 33 radiation treatments, no chemo. Tastebuds went away about half way thru radiation.
    After the mouth mess, for about six months and anemia (hospital stay) the summer was when the buds started to return. Of course the whole mouth pH changed and sensitive to many things. Bland foods and puree works okay. Now it is March '04 and the taste buds are back, but missing those where surgery took them. Most foods
    are palatable but beef is cardboard, no subtle flavors are recognized. I have tried reintroducing certain foods in the diet, but no avail. Overall, Boost, the blender, soft fish and yogurt smoothies keep me going. Every once in a while a cheeseburger with milk is good, but takes 1/2 hour to eat, since I have limited mobility of the tongue. Biggest issue now is full teeth reconstruction due to radiation induced decay and the loss of salivary output. But overall, I'm doing well and trying to gain weight. Let me know if you want more on the experience
  • Ramseur7
    Ramseur7 Member Posts: 5
    #15
    Reggie13 said:

    Hi Ramseur7,
    I, too, was diagnosed with sqamous cell carcinoma of the base tongue in April of 2003. I had both chemo and radiation treatment for 7 weeks. My doctors said studies show that this is the best way to treat this. I did have a peg tube inserted and still have it. It's been almost 7 months since I completed my treatments. I still do not have any salivary glands or taste buds. The doctors said that they should come back but don't know when. My Faith is the only thing that keeps me going. I can relate to you in wishing that at least you had the taste buds. I, too, think I could tolerate things much better if I had them. I want to eat soooooooooooooooo bad. I know this is not the answer to your question but I just wanted you to know that someone else out there is going through exactly what you are. Sometimes it helps to know this. Please feel free to write me if you wish. With your permission, I will had you to my prayer list.
    Hang in there Buddy,
    Reggie
    (Reggie13 from CSN)

    Thanks for all the replies! Reggie, it would be great to be added to your prayer list. I would also like to add you to mine. We realized early on during treatment that the strength that God gives is truly amazing. I can't imagine getting through this without faith. I hope you get to eat soon.
  • Ramseur7
    Ramseur7 Member Posts: 5
    #16
    Reggie13 said:

    Hello to My Fellow Survivors:
    First of all, I pray that God will continue to bless each and every one of you.

    I was diagnosed with Squamous Cell Carcinoma (Base of Tongue) April 2003.
    Here were are, March 30, 2004 after both chemo and radiation treatments, I still do not have any salivary glands, taste buds, and remain with a peg tube due to difficulty in swallowing.
    Does anyone know of a survivor who lost his/her salivary glands, only to have them return later?
    I hope and pray that there is at least one out there. This would give me so much hope. I'm afraid after 10 months I may have permanently lost my salivary glands. Only Faith keeps me from depression.
    If anyone can be of any help to anything I have said, I would greatly appreciate a reply.
    In the meantime, I will continue to add all of you to my daily prayer list.

    May God Continue to Strengthen You ALL!

    Reggie

    Reggie,

    Thanks for your prayers and also thanks for sharing your tremendous faith. God will sustain you!

    I wanted to let you know of some things I have learned about salivary production. I have heard that acupuncture has shown good results in the return of salvia. Also, I met a guy who had treatment to the head a neck 6 years ago. He said his salvia returned to normal after 3 years. I have heard that this is definitely a possibility. I believe for some folks salvia will eventually return, but it may never be the same as it used to be. I hope that you will be one of the lucky ones and have some salvia return! Check into the acupuncture also.

    Take care.
  • slevtov
    slevtov Member Posts: 5
    #17
    Waiting for Taste and Saliva to Return
    My husband had a squamous cell carcinoma in his left tonsil, that had spread to the surrounding areas. It was treated in 2004 with radiation and chemotherapy. Once all PET/CT scans were clear, he then got immunotherapy. It is now 4 years later and he still has almost no saliva and his sense of taste is very impaired. The only food he seems to enjoy is Thai food: Somehow the spices and sauces are pleasant for him. He cannot bear to ingest foods or drinks that are cold, so now he drinks warm to hot water with meals. The foods that are best tolerated are rich ones, like whipped cream, butter, soft boiled eggs, melted cheese. For a long time his doctors put him off, saying they weren't sure when his sense of taste would return. Finally an intern admitted to him that it would probably never return. Very frustrating!
  • Ron45036
    Ron45036 Member Posts: 4
    #18
    slevtov said:

    Waiting for Taste and Saliva to Return
    My husband had a squamous cell carcinoma in his left tonsil, that had spread to the surrounding areas. It was treated in 2004 with radiation and chemotherapy. Once all PET/CT scans were clear, he then got immunotherapy. It is now 4 years later and he still has almost no saliva and his sense of taste is very impaired. The only food he seems to enjoy is Thai food: Somehow the spices and sauces are pleasant for him. He cannot bear to ingest foods or drinks that are cold, so now he drinks warm to hot water with meals. The foods that are best tolerated are rich ones, like whipped cream, butter, soft boiled eggs, melted cheese. For a long time his doctors put him off, saying they weren't sure when his sense of taste would return. Finally an intern admitted to him that it would probably never return. Very frustrating!

    No saliva
    Yes Slevtov, it is VERY frustrating. I am almost 3 years post tx for squamous cell base of tongue cancer and I can relate to that frustration. I was told that it will probably never return also, and I'm constantly reminded how maddening it is. The love of my wife and family pulls me through each and every day. God Bless, Ron.
  • megjohnson
    megjohnson Member Posts: 1
    #19
    taste buds
    I was told by doctors that it would take months to get the taste buds back, and, i was shocked and surprised that it only took 6 to 8 weeks, just in time for thanksgiving. It's by far the worst part of treatment, including the painful parts, bc emotionally it's extremely frustrating. But, they do come back, a little at a time and it becomes quite an interesting experience. Cinnamon and pepper were the first taste buds I got back and I was obsessed with cinnabuns for the first week or so and then more complex taste buds came on after that. I even found my wine tasting skills have improved since my treatment. Weird??? very. But, all in all, they are the same and I was able to gain back most of the weight i had lost. Good luck.
    Megan
  • Imaweiser
    Imaweiser Member Posts: 1
    #20
    megjohnson said:

    taste buds
    I was told by doctors that it would take months to get the taste buds back, and, i was shocked and surprised that it only took 6 to 8 weeks, just in time for thanksgiving. It's by far the worst part of treatment, including the painful parts, bc emotionally it's extremely frustrating. But, they do come back, a little at a time and it becomes quite an interesting experience. Cinnamon and pepper were the first taste buds I got back and I was obsessed with cinnabuns for the first week or so and then more complex taste buds came on after that. I even found my wine tasting skills have improved since my treatment. Weird??? very. But, all in all, they are the same and I was able to gain back most of the weight i had lost. Good luck.
    Megan

    Mom had salivary gland cancer
    My mom 82yrs. old has/had salivary gland cancer,she had a tumor removed from behind her ear and went through 36 radiation treatments. She finished them in the middle of Nov.2008. By the time she finished her mouth was fried, ulcers on her gums, has thick skin in the back of her cheek that she bites every now and then, a spot on her ear that is still scabbed and weepy, no taste buds......it hurts to brush her teeth, even pickles on hamburgers (which by the way, taste like cardboard I've read the comments that say the same thing) pickles burn- everything is "just terrible".She can taste sweet- oh yeah she's diabetic so that isn't so great. I finally found a tooth paste that doesn't set her mouth on fire. It is training toothpaste for toddlers. I also bought her a Dora the explorer soft tooth brush for ages 2 and up for her birthday this Friday. She said both paste and brush feel really good on her gums (paste has no mint flavor which can set a sensative mouth on fire). She was using baking soda but, that was starting to dry her mouth and crack her lips. Does anyone have any other suggestions? She also wears a partial that doesn't fit so well. When they did the surgery on her tumor she sustained a little nerve damage. She has also had cyberknife procedure done on a spot on her lung, and in a couple of weeks she'll find out what they are going to do with a small tumor she has on her thyroid. By the way, she never smoked. Keep her in your prayers her name is Julia. Thanks Mary ann
  • tbaxter
    tbaxter Member Posts: 1
    #21
    Imaweiser said:

    Mom had salivary gland cancer
    My mom 82yrs. old has/had salivary gland cancer,she had a tumor removed from behind her ear and went through 36 radiation treatments. She finished them in the middle of Nov.2008. By the time she finished her mouth was fried, ulcers on her gums, has thick skin in the back of her cheek that she bites every now and then, a spot on her ear that is still scabbed and weepy, no taste buds......it hurts to brush her teeth, even pickles on hamburgers (which by the way, taste like cardboard I've read the comments that say the same thing) pickles burn- everything is "just terrible".She can taste sweet- oh yeah she's diabetic so that isn't so great. I finally found a tooth paste that doesn't set her mouth on fire. It is training toothpaste for toddlers. I also bought her a Dora the explorer soft tooth brush for ages 2 and up for her birthday this Friday. She said both paste and brush feel really good on her gums (paste has no mint flavor which can set a sensative mouth on fire). She was using baking soda but, that was starting to dry her mouth and crack her lips. Does anyone have any other suggestions? She also wears a partial that doesn't fit so well. When they did the surgery on her tumor she sustained a little nerve damage. She has also had cyberknife procedure done on a spot on her lung, and in a couple of weeks she'll find out what they are going to do with a small tumor she has on her thyroid. By the way, she never smoked. Keep her in your prayers her name is Julia. Thanks Mary ann

    Salivary Gland cancer
    I just completed treatment for my second bout with MALT lymphoma (salivary gland cancer), the first being in 2005. I was told that the production of saliva would not be the same, however that the remaining salivary glands would (over time) start to make up for the lack of the other two lost parotid glands.

    I taste very few things right now, and it is very frustrating. My throat still hurts but getting better. Anything with spice tastes 10x spicier than usual. Coffee doesn't taste good. Yogurts are tasting ok to me, so I mix up a smoothie with soy milk, fresh fruit, vanilla yogurt, ice, and a little honey. Tastes pretty good, but gets old. Fresh vegetables aren't too bad either...i like them alone or sometimes with a dip, depending on what I can taste that day.

    Good luck with your mom. Keep a water bottle handy at all times.

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