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

@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?

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.

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.

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

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.

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.

Thanks for all that, sure been a long road.

My experiences have been similar to dennymayo. I am 18 months post-treatment and foods that are spicy hot, acidy, or carbonated are painful. There isn’t much taste.

What I have found is that food texture is my new strategy. I might have a thin flour tortilla with some shredded chicken dark meat, some mushy veggies, a little pasta sauce, and a few peanuts to enjoy a meal with a variety of textures.

During treatment and for over a year after that I slept in my recliner because I had trouble breathing when sleeping. Today I am back in my bed.

I use a nasal rinse bottle 1-2 times a day to reduce congestion. But it’s always there.

Good luck.

Radiation damage is difficult. After 18 months, I still have trouble with dry foods (such as bread). But it is getting better. Over time he will learn ways to compensate for dryness.

I ate a lot of soups the first year. I soak banana bread in milk. I don’t eat many chips. But I experimented with breakfasts, and a banana with a large bowl of Life cereal has the right combo of texture and moisture to make a good breakfast.

I cooked a lot before diagnosis. It’s one of the struggles now. But a year ago I would try some food and be unable to eat it, and then be discouraged and disappointed. Now when that happens I use the info to adjust my cooking and eating.

Eating will improve, and he will adjust and learn what works for him