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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Julie H | @jkhagen1 | Oct 2 9:45pm

@calenbd You've made it through Phase 1: treatment! YAY!!! Phase 2: recovery (IMHO) is harder. My experience with taste is this: the first few weeks (once I was trying to eat again) was kind of awful. I remember trying ice cream and it tasted like salt. Anything with artificial flavor tasted horrid. I felt like those 35 days of treatment were just wasted. Then... in about 5 weeks I started to taste a few things. Now, I'm a few months post-treatment and my tastebuds are really like a child's. Simple things- like grilled cheese sandwiches, Mac and cheese, and cheeseburgers make my so happy! I am a foodie, but I do think it will be a while before I will appreciate the complex flavors I used to love. Right now, I'm just happy to be eating solid food and gaining a bit of weight. It's hard. Just keep trying things and you'll soon taste a difference week by week. Today I ate a Gyro! Wheeeeee!

pfitziern | @pfitziern | Oct 1 11:23am

In reply to @disac "I have just finished radiation for pharyngeal cancer and have no voice or taste. Every time..." + (show)

@disac DO NOT STOP SWALLOWING. ONCE LOST IS A NIGHTMARE TO GET BACK. DO THE SWLLOW ACTION U DONT NEED WATER

pfitziern | @pfitziern | Oct 1 11:20am

Last chemo/radiation 10/18/24. My taste came back end of march 2025. It took 4-6 weeks to et to 90 % then a couple more months to normal.

Sue, Volunteer Mentor | @sepdvm | Sep 29 9:13am

In reply to @twin1 "@vickie1320 how is his taste today can you tell me please ?" + (show)

@twin1 Hello, I just wanted to mention that this post from 2024 may not be active for her to respond. As a 13 year head and neck cancer survivor, I can say that I have a few permanent changes in my taste from radiation. I am very sensitive to salt now so that I use minimal amounts in cooking and my family knows to add their own at the table. Every now and then a food just doesn't taste as good as I remember it and I attribute that to the radiation affects. Overall though, my sense of taste is pretty normal. It did take over a year for it to really improve, with many gradual baby steps along the way. I was very happy when my favorite dark chocolate started to taste good again. Eating very mild and bland things during recovery worked best for me.

twin1 | @twin1 | Sep 28 4:35pm

In reply to @vickie1320 "Hi, there’s no doubt that radiation ruined his taste and saliva glands. He did not have..." + (show)

@vickie1320 how is his taste today can you tell me please ?

Colleen Young, Connect Director | @colleenyoung | Oct 2, 2024

In reply to @disac "I have just finished radiation for pharyngeal cancer and have no voice or taste. Every time..." + (show)

@disac, I add my welcome. I moved your post to this related discussion so you can meet others managing symptoms after radiation treatment.
- How long before my taste buds recover after H&N treatments? https://connect.mayoclinic.org/discussion/taste-bud-recovery/

Disac, when was your last radiation treatment? Did you have any other treatments?

William Olsen, Volunteer Mentor | @hrhwilliam | Sep 27, 2024

In reply to @disac "I have just finished radiation for pharyngeal cancer and have no voice or taste. Every time..." + (show)

Hi @disac Welcome to the Head and Neck Cancer group. Although you landed in a discussion about Ameloblastoma, a rather rare malady, maybe I can help you out.
Always feel free to start a discussion of your own rather than pop into another discussion. I know it can be a bit confusing initially. There are certainly people here who can help with many H&N cancer issues.
The radiation therapy can and often does take away our ability to speak. Voice requires the control of both the diaphragm and the vocal fold muscles. These vocal muscles can be weakened or stressed for a while. The fact that water sets off a cough is a good indication of some inflammation down there.
An ENT can take a quick look with a mirror to confirm.
I would bet cold water is worse than warm water to set off coughing. Many of us gargle with warm salt water or salt water with a little baking soda added. It helps.
These issues generally resolve themselves over time, weeks, even months because radiation is an injury to your good tissues similar to a burn. It takes a long time and is never quite the same when healed.
For me, taste came back slowly. Salt at first after three weeks. I lost taste for sweets but gained tastes for some foods I never previously cared for. All in all it took about a year for taste to stabilize.
Other issues might crop up such as nerve tingling, loss of bite control (biting your tongue or cheek) loss of saliva, etc. when they do, feel free to start a discussion or drop in on another appropriate discussion where other patients have had similar experience. Good luck and hope to hear from you.

disac | @disac | Sep 27, 2024

I have just finished radiation for pharyngeal cancer and have no voice or taste. Every time I drink a bit of water I start to cough badly if I don’t take a teeny sip. It sounds like a panic cough. I can swallow but it hurts.

roblem | @roblem | Jun 27, 2024

In reply to @crisatl "I had tonsilar cancer which affected the lymph nodes in the right side of my neck,..." + (show)

@crisatl

I had tonsilar cancer which affected the lymph nodes in the right side of my neck, both of which they removed. I only had radiation. I had a feeding tube through my nose for only about 2 weeks, but it took quite a few months to eat semi-normally. At first I had to puree my food. I ate a lot of mashed potatoes! Forget chicken. It is so stringy and dry regardless of how cooked. But an immersion blender works well. Slowly the numbness and a lot of the dryness went away. For me, I started getting my taste back after about 3-4 months. It took me awhile to be able eat hard things. The same with spicy foods, or different beverages, carbonated, a glass of wine, etc. This all took time, but eventually I was able to enjoy them again . But everyone is different. I'm 3 years post-op now and everything looks good. I was advised to make all my food somewhat wet to counter dryness or difficulty swallowing. I love gravy, so that was good news for me. Things like bread and pretzels can be difficult even now, so I have to go slow and even now they sometimes things get stuck, and I have to cough to loosen them. If you have had a feeding troop for quite a while , tou will most likely have to get your throat swallowing muscles working again. They will help you with that. Drink lots of fluids when you eat. They will also have exercises that you can do for your mouth or your swallowing. I have something called a tongueometer, or something that helps you stretch your mouth. Your swallowing PT can help you with all those things. I remember when I used to eat pizza that I always finished before my friend. A couple of months after radiation, she had finished her whole pizza, and I had just finished one small slice! But I'm back to keeping up with her now. I eat slower than I used to, but that's probably a good thing, and I probably chew things much better than I used to also.

As far as the man who shared about his son: The biggest and longest lasting problem for me, was my lack of energy! I've heard that it helps people to exercise even a little bit. That was the longest thing that it took me. I too am single. And looking back, it would have been wonderful and so helpful for me if someone had asked if they could come over and clean my house. Without that, things do pile up, and after a while they get to be a bit unmanageable!

Also, personal interaction is very important! During my surgery, recovery, and radiation, people remarked about what a great attitude I had. Instead of looking at the circumstances that I had no control over, I continually focused on my heavenly Father and His love and faithfulness to me! But the month after I finished radiation, was my hardest. I got depressed, and started worrying about how "I" was going to take care of myself! In about a month later, I went for an appointment, and on my way out at the appointment dusk, I realized I was like a " chatty Kathy"! It was only then that I realized that during my radiation I had seen And interacted with people on a daily basis. But after that, I didn't interact with anyone! No wonder I got depressed! So interaction, in my opinion, is extremely important to our healing!

I mentioned that to my radiologist, and they had a social worker who told me about a cancer support group that met near where I live. They meet both in person and virtually. You get to know people. You get to share your encouragements, but also your lows! It helps not to focus just on yourself. But it also helps to realize you're not alone! They also have these groups for the families and caretakers of cancer survivors. BUT, I had to find out about all of this stuff little by little, like by asking for help or answers. For whatever reason, I don't think that the hospitals or doctors lay out all the many resources that are available to us. So I think it's important for us to share with them what we are experiencing or going through, so that they can then suggest a resource.

I'm sorry this was so long, but I hope this helps someone.

Jump to this post

Spot on @crisatl as radiation is a gift that keeps on giving unfortunately.

I am 16ys out from my tonsil cancer (2008) where I had 35 rounds of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin. I had other issues come up along the way. So be very aware of what is going on inside your mouth and throat. To name a few off the top of my head, it destroyed my thyroid giving me Hypothyroidism (makes you feel fatigued and most of the time you gain weight too) so now I have to take a pill for it for the rest of my life. Watch your bone structure and tooth decay in that region too- so make sure you go to your dentist every six months. Paralyzed one of my vocal cords so my voice is not as loud as it once was. And most recently likely was my cause of getting tongue cancer this year.

I also attached a couple articles around the long-term side effects for head & neck survivors.

Best Rob

Shared files

Long Term Side Effects of Radiation Therapy for Head & Neck Cancer Survivors_04-24 article (Long-Term-Side-Effects-of-Radiation-Therapy-for-Head-Neck-Cancer-Survivors_04-24-article.pdf)

Low-Dose Radiation To Treat HPV Throat Cancer a 'Game Change' 02-12-24 (Low-Dose-Radiation-To-Treat-HPV-Throat-Cancer-a-Game-Change-02-12-24-2.pdf)

crisatl | @crisatl | Jun 26, 2024

PS, And do get your PCP to check out your thyroid! It wasn't until about 14 months after my last radiation that I went for my yearly physical, and my doctor discovered I now have hypothyroidism, which I think was a result of the radiation of my neck. Hypothyroidism, which I still don't really understand, can make you feel tired! She later said it probably would not have shown up immediately.