An Update

Dale
As you know from reading the other responses, everyone's time is different. I'm 18 months post treatment and my rad onc was surprised when I saw him last month, he said your tongue is moist. Sounds like a strange remark but it's because this was the first time he had seen any signs of moisture in my mouth in over a year. I still carry water with me at all times and sip on it constantly, can't chew gum and don't like hard candy so I just stick with the water.

I think it was about a month post treatment before I really "ate" anything. The first thing was scrambled eggs then mashed potatoes with a lot of gravy. If you like oatmeal that also goes down quite easily and the instant comes in so many different flavors. It will mostly be trial and error for a while. If I thought of something that sounded appetizing then I would try it, if it tasted like crap then I would wait and try it again in a couple of weeks.

I swear by Ensure Plus, to me the taste wasn't too bad and it's quite nutritional with 350 calories per bottle. It can get a bit pricey if you drink a lot of it but it's worth it.

Mostly though you just have to learn patience...ha ha ha!!! I am the least patient person in the world but I survived, I kept telling myself...next week will be better. Eventually things did improve and now I don't have too many complaints. I'm still bothered by some side effects but things could be worse, they could be a lot worse!!

Stay strong and keep fighting,
Glenna

taste etc.
Hello Dale, I am about 7 months out of tx. Had my J tube and peg tube removed about 3 weeks ago. I had difficulties with the tubes and nutrition, could not eat due to stricture in my esophagus. I dropped just over 100#. I had to seek an alternative stimulant to help me eat.
I was against it. Was recommended by my psychologist and it really helped me.
I was on a feeding pump 24/7 for a while and did not tolerate the feedings very well.
There are difficult times ahead but it does get better. I cooked and ate for pleasure. Eating is more of a job than a pleasant experience these days. saliva has barely returned at this point, I am hopeful. Nothing tastes as it did.All basic spices burn the tissue in my mouth, I really miss the flavor of Tabasco! Meats and breads pretty much just stick to the back of my throat. I eat a lot of eggs, pancakes and waffles. Lucky charms are my munchie of choice! I don't know why but i can eat them with little trouble.
We adjust.We have to. Now we get to live! It can be really hard to be happy with all of this, but just think of what could have been had we not been diagnosed in time. I was stage 4a tonsillar. Good luck and keep your head up!

tonyanddenise said:

taste etc.
Hello Dale, I am about 7 months out of tx. Had my J tube and peg tube removed about 3 weeks ago. I had difficulties with the tubes and nutrition, could not eat due to stricture in my esophagus. I dropped just over 100#. I had to seek an alternative stimulant to help me eat.
I was against it. Was recommended by my psychologist and it really helped me.
I was on a feeding pump 24/7 for a while and did not tolerate the feedings very well.
There are difficult times ahead but it does get better. I cooked and ate for pleasure. Eating is more of a job than a pleasant experience these days. saliva has barely returned at this point, I am hopeful. Nothing tastes as it did.All basic spices burn the tissue in my mouth, I really miss the flavor of Tabasco! Meats and breads pretty much just stick to the back of my throat. I eat a lot of eggs, pancakes and waffles. Lucky charms are my munchie of choice! I don't know why but i can eat them with little trouble.
We adjust.We have to. Now we get to live! It can be really hard to be happy with all of this, but just think of what could have been had we not been diagnosed in time. I was stage 4a tonsillar. Good luck and keep your head up!

Tony and Denise
Not sure you'll want to try this, and please don't hold me liable, but I was on pretty-much a pancake and ice cream diet for a couple months, and along comes the company golf tournament. Club house had little choices, so I opted for a hot dog and overloaded it with mustard and diced onions, for a reason that escapes me. And to my shock- it was great! Very little bites, with the mustard providing the lubricant, but that was the event that got me around the corner w/eating. And that was around month-five, post-treatment. Couple weeks later I discovered Roadhouse Chili, and it's a regular, now. Yes, there is a degree of discomfort with it, but the taste actually registers, and to the positive.

Realize, though, that my only throat problem was the swelling from the rads during treatment- mouth is what took the big hit.

kcass