OK, this is a question for those who have been out of treatment for some time now. My husband has always been a picky eater. Now he is almost 3 weeks out of radiation/chemo, and I can't get him to try foods again. He can swallow water, pills, and an occasional bit of cream of wheat. Because everything still tastes yucky, he says that he isn't going to try to eat until the taste comes back. He has one bite of something, then won't have any more. We have been told that he needs to eat whether it tastes yummy or not. He has a peg tube and he is getting the nutrition and water he needs daily, so this isn't a question of major weight loss. Just learning to eat again before his throat tightens and he isn't able to eat.

So for those of you who are also picky eaters and who have been through this, please give me your 20/20 hindsight recommendations. If you could do it again, what would you have done differently? How do you get past the taste to eat when you know it is good for you?

His goal is to eat Thanksgiving dinner in a month. Not sure how realistic this is.

Karen,

I couldn't eat much for at least six weeks to two months post-treatment. But after that, I slowly made the transition. My mouth was too sore, too phlegm-y and it was just too hard. If he's getting the calories he needs through the PEG, is drinking water and weight loss isn't a problem, then I'm thinking he's going to take whatever time he needs to get back on the swallowing horse.

- Margaret

Karen,
My taste changed (ever to slightly) almost weekly so I recommend you encourage him to keep trying and re-trying soft foods. But, during the first month I really didn't eat much -- mainly still, like during TX, just small helpings of soft stuff like puddings.

I was told if I could drink water, juice and eat a couple pudding cups a day that should be enough to keep my throat and swallowing working.

I drank a lot of juices like grape and berry juice.

Getting back to eating somewhat normally took me about four months and a times was really a downer. Then, after a month or so, at time it was kind of an adventure. My progress seemed slow.

Karen,
Replyed to you on the ASC board but haven't seen it post.

RT told me that the more items (and variety) that you have rolling over your tongue the quicker you recover your tastes....kinda made since after thinking about it....//Barry

I try everything but haven't gINED ANT TASTE EXCEPT THE 1ST BITE OF ANYTHING, THEN IT'S GONE AGAIN. Someone want a caps key?? LOL This one is about to disappear.

I'll try this again as my first reply froze! I remember my first post treatment Thanksgiving. I was about a month out from treatment and also had in my head that I was eating Thanksgiving dinner! I did, and it took a looong time with more "Enjoying my family" than actual eating, but it was all good. My advice, keep experimenting and pushing, it gets easier. Never where any of us were (Probably) but it does improve and we do adapt. I agree and remember, the first bite and flavor, then flat.... Then 2 bites and nothing.... Then 3 or 4 (And lots of water to get it down), but no flavor... I still can't make an entire meal without just going through the motions with much of it. When you find those foods that make you "Feel good" enjoy them!!!
Best Wishes,
Steve

Three weeks post Tx I was just walking out of that dark tunnel and I couldn't taste crap, literally. LOl Way way way to soon to be pushing him about eating solid foods because believe me there is nothing worse than putting something in your mouth that your brain remembers what it's supposed to taste like only to have your taste buds (what's left of them) tell you something far far different.

His taste recovery may well take all of 2 years and during that time he will slowly regain some to all of his pre TX taste ability. I'm 3 years out and I still don't taste things 100% like I used to but I'm more than satisfied how much I've recovered since the end of radiation.

Another thing he will have to mentally deal with is that due to his dry mouth, which will also gradually improve from where it is today, eating will take much much longer. Add the yucky to no taste sensation and the whole eating experience plummets to a 1 or 2 out of 10 on the pleasure scale. Really that's all eating is, it's a pleasurable event, otherwise we would all just take a pill each day.

I lived off of Carnation VHC for close to a year post Tx. I always drank one with each meal to make sure I was getting enough calories.

It will get better.

Here I am again - bitching about this constant sweet-putrid taste in my mouth, with constant mucus. Am I the only one that has this? It's not just when I first get up in the a.m., it's constantly there; I spit (yuk) all day long to get it out. It'll be 2 years next week since my tratments (chemo and radiaiton for tonsil cancer), and it's worse now than during and right after treatments. I keep mentioning my complaint in hopes that someone else has the sweet, after-effect and it can be related to the treatments. I'm in the process of having other things checked out (e.g., gall bladder, hietal hernea, other gastro problems), but if I find others have had such a problem and associate it with treatment after effects, maybe I could accept that is what it is - after effects. My chemo and radiation doctors say it could or could not be associated??? Has anyone out there had such. Thanks for any replies.
julieann

Uh oh:
Think I posted this under the wrong topic - maybe I should post on After Treatment Issues. Sorry.
julieann

Karen

It's still early for him and his taste. I was still on "the liquid diet" thru the PEG tube at 3 weeks but as I started to get back to solid food I quickly noticed that what I liked and could eat before had no bearing on what was tasting good to me. My biggest craving was a big juicy greasy cheeseburger. Tried that, and YUCK! Just couldn't do it.

I have found that fresher the better, which for me means the local farmers market and Whole Foods Organic store. Just suits my taste buds better, not so much the "it's so much better for you" mantra, and even the family is starting to catch on

The key is experimentation.


Kevin