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

Hi William,
You responded to my initial post about my husband's cancer when he was diagnosed in last June. Thank you!
It would be a gross understatement to say this journey has been difficult. I am a cancer survivor (breast). I had a lot of surgeries and chemo, but no radiation. My husband's experience worse than mine because of the treatments. He had drop foot from the chemo (carboplatin) and now has neuropathy in his right leg causing balance problems, pain & numbness. He says the PT is helping. We are not praying he won't need surgery to remove the lymph node in his neck.
I have been reading as much as I can find re the taste issue resulting from radiation. His radiation oncologist says it could take up to 2 years. But I read it can be much longer.
I'm glad you didn't have this issue so bad. It's hopeful to hear that you got your taste back.
Thanks for your support as we move through this process that we thought would be over by now (11 1/2 months after diagnosis).

I had very similar cancer and treatments however my taste came back slightly within a few weeks and more or less fully within a year. People complain of loss of taste from Covid 19 or from surgery to the tongue but that doesn't seem to be the case here. A doctor visit might be in order to find out what is going on.

Hi there,
Back in 2008 had tonsil cancer and it was in 3 lymph nodules one being almost 8cm, so I had 35 rounds of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin. In looking back at my notes, it took me about 10 months to get most of my tastes back and not have alcohol not burn as much and have my dry mouth the best since I that treatment began.
On the positive side, when my taste buds started coming back, I actually enjoying more healthy vegetables that I never liked before and some sweats were even sweater. Good luck and safe journey.

Best,

Rob

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 !!!

I have a similar story. My last radiation and chemo treatments were on August, 2022. It took a long time for my taste buds to “wake up”. Slowly I was able to enjoy eating again. I can swallow foods now without choking. Some of my favorite foods from the past don’t have the same flavor, however. I used to love chocolate, but now not so much. Maybe that’s a good thing in disguise. I guess I can describe my taste buds as a bit “dull” as compared to before cancer. My experience is that your taste buds will return, but maybe not to the same level as before. Experiment with new foods and be grateful, as I am, to be able to eat solid foods at all. I pray your journey is goes well.

They will come back gradually. I had my last treatment in May. As for as solid foods, you should be good to go in 2-4 months. Keep trying different soft things.
As far as enjoying eating again? I don’t know. Meal time is not what it used to be as far as enjoying. That said I am very thankful for my progress and it sounds like you are doing well.

I was told by my ENT that by post 12 months, you might not get any further forward progress. I am at 40 months post chemo/radiation, and I am still waking up my taste buds. My ability to handle spicy hot foods is not normal. Hot peppers really aren't that hot. Keep trying don't give up, try new foods and spices. I cut out all floride from my life, which might have helped?!

@teresat47, I agree. Education articles are often too general to be helpful for one's personal situation. But I find they can give a starting point and then it's trial and error, talking with symptom management nurses and fellow patients that help the most.

I'm sorry that you've had to avoid one of your favorite foods/flavors - cinnamon. Hopefully that this something you can look forward to enjoying again after treatment and recovery.

Are you finished radiation now? How are you doing?

I have very similar experience. I am enjoying more solids now 4 months out of radiation. It takes discipline, and will power to push through eating. I am beginning to enjoy some meals again.

Have to agree that most will have their own unique experience and essentially find out along the way as things progress. I had 2 surgeries and 25 radiation treatments. Took about a month after 2nd surgery to start sipping tiny bits (and I mean tiniest of tiny sips) of liquid and I asked to have my feeding tube removed. Forced myself to get nutrition via nutrition drinks. I was gradually able to increase my sipping to where I could drink a small nutrition drink in one hour….then kept progressing from there.

I found vanilla flavored nutrition drinks were tolerable, but other flavors were awful for the first few months. It took me about 2 months to find other drinks or flavors that I would enjoy and/or tolerate.

I’m now 9 months out from 2nd surgery, and 7 months out from radiation.

Drinking is functionally back to normal, but still not back to normal as far as what I can drink. Many things irritate my throat or are outright painful to drink. Carbonated drinks or anything spicey are the worst. Fortunately, taste is back to normal for most drinks, and I’m back to enjoying my morning coffee.

Eating was much more of a challenge than drinking. Food taste was awlful for most foods for almost 3 months. I gradually introduced soups into my diet. Egg drop soup was my go-to for a couple weeks. I had to experiment to see which other soups I could swallow, and also see which ones I could taste or at least tolerate. From soups I moved on to really runny eggs. I found from the egg drop soup that I could start tasting the eggs, so figured I’d try eggs. Success. For about a month I was eating my runny eggs and enjoying them. From there I did trial and error to see what I could swallow and/or taste. Most foods would get stuck in my throat, so moving on took quite a bit of time and experimenting. Even to this day, eating is not really enjoyable any more. I can taste a lot, but swallowing is a challenge, and that makes eating a chore as opposed to an enjoyable experience. Meats have almost no taste to me, so I can’t enjoy a good burger or steak like I used to. Maybe that’s good as far as overall health. Food still gets stuck in my throat, but I’m using that as exercise to improve my swallowing. I try not to use liquids to “wash down” food. I want my swallowing muscles to get stronger, so I make them work to get the job done. Many coughing and choking moments, but I’ve just accepted that as my new normal fit now.

So, that says a lot…a new normal. Eating and drinking is nowhere near what it used to be, but I’ve adapted and accepted it as my new normal, and hope for at least a bit of improvement still to come. I think of it as a character builder and learning experience. Living and staying alive isn’t guaranteed. I figure I’m fortunate to be alive and enjoying most parts of life again, even though eating and drinking aren’t part of the enjoyment.