How long before my taste buds recover after H&N treatments?

Posted by calenbd @calenbd, Sep 27, 2022

I have completed 35 treatments of radiation and chemotherapy two weeks ago for squamous cell cancer in my tongue and lymph node. I’m just wondering how long before I can expect my taste buds to recover so I can taste good again? I’m currently on a feeding tube, but my throat pain and mucus is diminishing, so I am looking forward to eating solid foods again.

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@stephenrfleury

@vickie1320 I don't think "scanxiety" ever goes away. The earlier in the recovery, the scarier it is. I still worry each time even though it's been 3 1/2 years. The brutality of the treatment is really fresh on your mind in those early days, plus the obvious risk of the cancer having returned, or I guess never had gone away.

The saying "don't worry about something you can't control" is absolutely accurate and logical, but it is impossible to be logical when you are dealing with cancer. Tell your husband I am hoping for the best for him.

If he ever needs someone to talk to, I can talk. Talking to someone who has experienced what he has, who he doesn't have to worry about what is said, is very useful. I know when I was post-treatment, I did not want to tell my wife my darker thoughts, because I knew that this was traumatic for her also.

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Thank you so much. Ill
Pass this on to him. He did get his pet Ct last this week abs it was clear! We are very 😃

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@cris2

My husband had tonsil cancer and he still struggles to eat dry or harder things. He still hasn’t gained much weight and it’s been three months since last treatment. The dr just said it takes lots of time to put weight back on. He isn’t even feeling 100% yet, June will be four months done with treatments. Is this what it’s likes for others too? He’s nervous about his first pet scan coming up.

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I had tonsil cancer back in 2008 and in looking at my notes, it took me about 13-14 months to get all my weight back. I was 222lbs when I started and went as low as 205 my last week of radiation treatment but I was pretty lasered focused as I didn't want a feeding tube.

You will get better.

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@cris2

My husband had tonsil cancer and he still struggles to eat dry or harder things. He still hasn’t gained much weight and it’s been three months since last treatment. The dr just said it takes lots of time to put weight back on. He isn’t even feeling 100% yet, June will be four months done with treatments. Is this what it’s likes for others too? He’s nervous about his first pet scan coming up.

Jump to this post

@vickie1320 I don't think "scanxiety" ever goes away. The earlier in the recovery, the scarier it is. I still worry each time even though it's been 3 1/2 years. The brutality of the treatment is really fresh on your mind in those early days, plus the obvious risk of the cancer having returned, or I guess never had gone away.

The saying "don't worry about something you can't control" is absolutely accurate and logical, but it is impossible to be logical when you are dealing with cancer. Tell your husband I am hoping for the best for him.

If he ever needs someone to talk to, I can talk. Talking to someone who has experienced what he has, who he doesn't have to worry about what is said, is very useful. I know when I was post-treatment, I did not want to tell my wife my darker thoughts, because I knew that this was traumatic for her also.

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@stephenrfleury

@vickie1320 This is probably not what you want to hear, but here goes. It's been 3 and 1/2 years since the end of.my treatment and my taste buds have never returned. I can taste super sweet stuff and things that have vinegar. Nothing else has come back. My oncologist has said there is really nothing that can be done.

For me, I have mostly accepted it and realized I have to eat to live. I now just eat what my wife likes and it's the way it is. If I eat out, I just get things I used to like and imagine how good it was.

Jump to this post

My husband had tonsil cancer and he still struggles to eat dry or harder things. He still hasn’t gained much weight and it’s been three months since last treatment. The dr just said it takes lots of time to put weight back on. He isn’t even feeling 100% yet, June will be four months done with treatments. Is this what it’s likes for others too? He’s nervous about his first pet scan coming up.

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@cris2

Did you have any nasal problems after, it’s been 3 months since treatments ended and now he’s stuffy and can’t sleep good. He’s had all the rinses and nose sprays nothing helps. I think the radiation ruined that.

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I use an aerosol spray called Simply Saline, Flonase Sensitive and Ayr gel each morning and night.

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@stephenrfleury

@vickie1320 This is probably not what you want to hear, but here goes. It's been 3 and 1/2 years since the end of.my treatment and my taste buds have never returned. I can taste super sweet stuff and things that have vinegar. Nothing else has come back. My oncologist has said there is really nothing that can be done.

For me, I have mostly accepted it and realized I have to eat to live. I now just eat what my wife likes and it's the way it is. If I eat out, I just get things I used to like and imagine how good it was.

Jump to this post

Did you have any nasal problems after, it’s been 3 months since treatments ended and now he’s stuffy and can’t sleep good. He’s had all the rinses and nose sprays nothing helps. I think the radiation ruined that.

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@stephenrfleury

@vickie1320 This is probably not what you want to hear, but here goes. It's been 3 and 1/2 years since the end of.my treatment and my taste buds have never returned. I can taste super sweet stuff and things that have vinegar. Nothing else has come back. My oncologist has said there is really nothing that can be done.

For me, I have mostly accepted it and realized I have to eat to live. I now just eat what my wife likes and it's the way it is. If I eat out, I just get things I used to like and imagine how good it was.

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Thank you I'm so sorry. This may be the case for my husband as well. He started taking those ACE Zn vitamins, but it may be too late for any improvement. He’s radiation doc still says “ it could take up to 2 years” which sounds like code for you’re screwed!we just keep looking up and hoping for the best.

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@vickie1320

Hi, my husband had radiation & chemo for tonsil p16+. He finished treatment almost 9 months ago & still cannot taste anything. He was not on a feeding tube & lost all saliva production.
I would do appreciate responses re return of taste, any taste. He is becoming worried he will never taste again! It’s a real struggle to keep weight on as his appetite is so diminished.
Also, I heard that the longer you go without taste, the more likely it will never return.
Please help🙏🙏🙏thank you all !!!

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@vickie1320 This is probably not what you want to hear, but here goes. It's been 3 and 1/2 years since the end of.my treatment and my taste buds have never returned. I can taste super sweet stuff and things that have vinegar. Nothing else has come back. My oncologist has said there is really nothing that can be done.

For me, I have mostly accepted it and realized I have to eat to live. I now just eat what my wife likes and it's the way it is. If I eat out, I just get things I used to like and imagine how good it was.

REPLY
@cris2

Did you have nasal problems, my husband had tonsil cancer and had radiation treatments, that’s over with but he has stuffiness, can’t breathe good at night, he’s used nasal rinses and sprays nothing helps. I wonder if radiation ruined that.

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Maybe nebulizing 3% saline w/reduced glutathione will help?! It works for me, but you should check with your ENT prior to starting anything new. #postnasaldrip

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@cris2

Did you have nasal problems, my husband had tonsil cancer and had radiation treatments, that’s over with but he has stuffiness, can’t breathe good at night, he’s used nasal rinses and sprays nothing helps. I wonder if radiation ruined that.

Jump to this post

Because of the dry mouth from treatment, I slept with a bottle of water next to me and got a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help get some sleep. Hope this helps.

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