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

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

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.

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

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.

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.

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.

How long after treatments did you still feeling yourself and more energy, did it take awhile? Were you worried to have pet scan? That’s coming up for my husband and he’s worried.

Did it take awhile for you to have more energy and get back to normal?