Dave finished his treatment in May and in many ways is healing beautifully.
However, his desire for and relationship to food is very different. He does have some taste but certainly not what it was.It seems harder for him to eat "normal " size portions.
It (thankfully) is no longer uncomfortable for him to eat(although he does get the mucous thing sometimes while he is eating). It just seems as if his appetite is way down and his portions are so small compared to what they used to be.
He is still using some ensure as a supplement to keep up the calorie intake he needs.
I was wondering if other people found themselves with a reduced appetite or just a different attitude towards food in general.
And if so, what helped to increase it.

Susan - My son definitely had a much different attitude towards food and progress was very slow with different tastes developing at different times. It's been almost 4 years now since his end of Tx and he tells me that his taste is about 90% what it was BC. He did have 1/6 of his tongue removed and he said that for that particular portion, he does not have taste but he tells me now that each portion fo his tongue seems to be responsible for certain specific tastes. In the early recovery days, he could not eat very much each time so I tried to get him to eat more often and accompanied by lots of water. Since everyone is different, there is no guarantee that what someone else likes will be pleasing to a particular person. So if you buy something he thinks he might like, don't buy a lot of it. I remember buying a big container of protein powder to mix in with his milkshakes and with just a small taste of it, he said it tasted awful and would have none of it ever. He has, however, developed likes for things that he never used to like before he had cancer, like brussel sprouts which he never liked all through his growing up years. Now, he tells me he likes that even more than he likes Spinach (his former favorite)! So - the "new normal" that you hear about on this forum can be really good as well as new.

Susan,

Post Tx with poor taste and poor saliva and in a weakened state I too found eating a chore, who wouldn't. I too ate small portions but I also drank a can of Carnation Instant Breakfast VHC with each meal to make sure I was getting enough calories and the right kind because I found myself more attracted to "feel good" foods that were either sweet or fatty. During my long recovery, well over a year, I gradually regained my taste and saliva (now appx 90% pre Tx levels) and I regained some weight and shed the weakness and as I did my eating habits returned as well.

Bottom line....he's normal and give him time to slowly recover.

Susan, David is right, it takes a lot of time. I am one yeear post tx. it did take about 2 months before I could eat, They all I could eat was eggs and hamburgers, as Davis calles them feel good foods. I also took ensure plus every day and tapioca pudding. I waited about 6 months then I started taking weight lifters supliments. Anyway mi diet stunk! I might have cured the cancer but was on the wau to a heart blockage!. The path back to a good diet has been long( and i am not there yet!)Give your hubby lots of time, this is a long and tough trail!
Steve

Hi Susan,
Glad to hear that Dave is doing so well. In answer to your questions, I think time will be your friend on this one. Gordon has had pretty much the same experience and finished treatment around the same time as Dave.
He has to drink a sip of water with each bite of food and his portions are much smaller than they used to be (and this was a guy who was a *big* eater). Nothing he used to like tastes good anymore, and he gets bored with a particular dish very quickly. We're able to eat out (mostly Japanese or Greek right now), but he gets bored with that too. He's developed a taste for anything deep-fried, like fish and chips, kalimari, tempura etc. Definitely the way to a heart attack, but at least he's eating. We try not to have stuff like this at home, where he's getting rice, protein and vegetables. He's also developed a sweet tooth and has tried a few things on his own but luckily not a lot. Food has always been a great source of pleasure for him, but now it's just a chore. I think everything will "normalize" eventually, but never be exactly the same. I'm still pushing one "milkshake" a day, just to keep up the calories and nutrients, but he's starting to find them overly sweet, so I don't know how long that will go on.
What seems to work one day won't necessarily work the next. Just be patient and "go with the flow", because things may be in flux for quite awhile.
Anne, who is a fine one to talk about being patient!

I still have eating issues. I certainly don't enjoy eating the way I used to, but I am thrilled when I find something that I can taste and can eat. I eat very slowly, and certain foods don't work at all. Chocolate doesn't taste as good to me (bummer!)and I really miss "crunchy" things. I discovered Tyson's frozen chicken wings: the tequila/lime flavor. They aren't as spicy as the regular buffalo wings, but they have some flavor. I can also eat most seafood as long as it isn't heavily breaded. I still drink a couple of Ensures a day to make sure I am getting the calories and nutrition I need.

Flavors of foods are not as intense for me now. I can taste but not as strongly. I eat because I know I have to but it's not as enjoyable as before. Alot of foods are just not worth the effort. I stay away from bread products because they just get stuck in my mouth. Tangy foods (pickles etc.) are extremely tangy and tart and spicy foods are extremely spicy. It takes me longer to eat. I still drink Carnation Instant Breakfast every morning to help get the nutrients I need. I have gained back some weight - I did not have any type of feeding tube and only lost 9 pounds through my treatment period. To sum it all up, my eating habits have changed.

Susan,

I notice that most of my taste has returned but I loose it through the meal (EZJim said the same thing). I often put part of my meal aside and heat it up later. I went to dinner with my son tonight and brought half the meal home. I�ll warm it up later tonight

Some things have changed. I used to love pineapple, now it�s too tart. On the other hand I hated tomatos, now I love them. As I said to my brother lately,� every meal is an adventure�. I�m trying all kinds of things I never liked to see if I like them now, I�m finding a few that I do so it�s not all bad.

I have learned to lower my expectations with food and then can enjoy the nice surprises when they come.

Susan, all of these experiences are valuable teachers. Mine is similar to many. The fact that half of my tongue was left numb from my neck dissection and the sensation - and therefore the taste buds - there hasn't returned doesn't help my enthusiasm for eating. But I do it. Hang in there, both of you. Things will definitely improve with time!

David 2

My experience is much like most. It takes quite a while to get a meal down, and I just plain loose interest in the process. However, I do recognize the importance of eating, so I make sure I eat three times a day - regardless of if I feel like it or not. I have noted that I just never feel hungry.

I'm one year out and still find eating a chore and when I eat it's a 2yr old sized portion, no joke, my 2yr old actually eats more than me! I still supplement twice daily via peg since it takes me so long to eat and the drs think i'm way too skinny and need to fatten up.

My taste buds are getting a little better, I can taste most things but a little altered. My tongue will still burn quite a bit on random things that aren't even spicy or acidic.

I can't drink without adding some thickener to my drinks because I aspirate on thin liquids.

I say with time, he will get better, hang in there!

EllEll and others,

Look the thing about our S L O W recovery is that it is S L O W but and there always is a but, do not think early on that this is the way you will be for the rest of your life. It's frustrating for sure but for the ones of us "lucky" enough to just get the chemo/rad we do recovery a great deal of our pre Tx saliva and taste and the joy of eating will return. For me, it wasn't until my 15th month post Tx that I had a bust of improvement that left me satisfied that if I didn't recovery anymore I could live with it (like I had any choice, but you know what I mean). I saw another slight improvement at 24 months and nothing since. I estimate I'm back to 90% of pre Tx levels. Even at my estimated 90% I can tell that my taste is not as sharp and still drops off the more bites I take and I still do get dry at certain times but please just try and give yourself a good 2 years to recover.

David, can I have the 10% you aren't using? LOL Thanks buddy.

Thanks so much for all the responses. I'm sure Dave will thank you too because this means I can lay off nagging!!! He is working hard on keeping up with those 3000 calories so for the time being I won't worry about what he is eating to do it. We were just talking today about what his cholesterol is going to look like . It is so true about wanting those comfort foods. He's become a root beer float addict!!! So random.

Another big thing in regards to learning to eat again is texture. Anything that had a rough texture or of course spices I wouldnt eat. The first time I tried chinese food I was at a buffet. I frantically ran to the beverage refill section and gulped glasses of chocolate milk to ease the burning. Mashed potatoes that are homemade and arent blended smooth I cant eat.

Have Dave try pancakes with butter and real maple syrup. The chemicals in processed syrup can burn your mouth. Thats something that is fattening. It will be a while before he needs to be concerned about low cal foods.

I would bet his cholesterol count is much lower. Now my worry is the sugar count from eating tons of cookies, but my PSA went way low and so did the Cholesterol. I sure do agree with Christine on the homemade mashed potatoes . It feels like a mouthful of sand. Christine is up on everything and I read all of her posts for their wisdom.

I don't know if I can respond to old listings ...but I was shocked at how right on the food selections were ...I eat all the same things ..cookies, snack cakes, desserts, and yes too whipped potatoes get stuck up in the roof of my mouth along with soft breads, Cannot drink carbonated soda - has to be flat ..juices have to be diluted. My Ensure is mixed with Ice Cream to give it a thicker texture. But I worry about my diabetes and cholesterol. So far I am not too bad as my portions are so so small - give up often trying to work it down my throat to swallow and there is not so much pleasure - I used to LOVE food! - I just eat off my husbands plate. Desserts are more desirable.

All these posts on food tonight. I guess I have to admit I've given up on eating solids as of late.

Of course we are all different in side effects etc...but with the tongue and facial paralysis coupled with the other effects it's just too much for me if I want to try talking most of my day...and I'm not good with that for long periods either. To maintain my weight and muscle content, which seems to be ever increasing lately, I just stick to Ensure Plus mixed w protien powder. I do make an effort to eat some solids everyday, but I'd rather not.

I don't even get up for desserts anymore (as a wrestler they were always my vice sucking weight) due to my teeth falling out of my head.