Hi all! I'm really struggling with food versus peg feeding. Any suggestions of foods that will at least taste good or even ok? Radiation & cisplatin got my taste buds, nothing tastes as it should or as I want it to. The formulas make me sick & mentally I think I resist. I'm down some in weight, 188 this morning vs. 225 when I started this journey. My wife is freakin' out & I guess I'm kinda with her. Lately I feel like quittin' treatment, really, although deep down I know thats not realistic. Just sick of bein' sick. Being from the NW, I love strong Starbucks french roast coffee w/sugar & half & half, but it tastes salty. Thats just one example of how off my taste is. OK, I'm done bitchin'!! It is a beautiful morning in western Washington so I'll turn my sights on the weather. When it's good in this state, there is no better! My whole yard has exploded in color & is a joy!

Erik, what formulas are you using? Have you tried Carnation Instant Breakfast with whole milk? That is what I was told to try. When I went through Radiation I did not have the PEG so all nutrition was oral. It sounds like you have distorted taste and I had none at all. I had an extremely heightened sense when it came to the texture of everything I ate. Mashed Potatoes - very gritty, Ice Cream - you feel all the ice crystals and so on. That will turn you off of foods real quick. It got to the point that I was even unable to smell for a time. So I pretty much lived on Carnation Instant Breakfast. I replaced Coffee with Tea, it's still not the same morning boost as a good cup of Coffee. I also ate homemade soups, not the canned soups. As time goes on try making some Smoothies or even Milk Shakes.
David

Erik, I can agree about the weather here. Absolutely fantastic this time of year. About taste, salty is the last to go usually, and pretty soon you will probably taste nothing, so you are just going to have to hold your nose and swallow. Before I lost all sense of taste, I found that honey lemon cough drops took away the awful metallic taste from the chemo. The last thing that tasted okay for me was salmon. I remember being in Costco when they were giving samples and I just stationed myself there and ate and ate. I have now recovered both my taste and sense of propriety. Day at a time, Erik, day at a time, and you will make it.

Have you tried yogurt, oatmeal, scrambled eggs, malt-o-meal. I couldn't do mashed potatoes because of the texture, too gritty. Mac & cheese was pretty good. Tunafish with lots of mayo went down okay as well. I was only able to do very small portions at a time. Hardly enough to even count the calories, but you asked for some suggestions. Wendy's frosty are high in calories if you can stand the cold.

Lynn

Have you tried yogurt, oatmeal, scrambled eggs, malt-o-meal. I couldn't do mashed potatoes because of the texture, too gritty. Mac & cheese was pretty good. Tunafish with lots of mayo went down okay as well. I was only able to do very small portions at a time. Hardly enough to even count the calories, but you asked for some suggestions. Wendy's frosty are high in calories if you can stand the cold.

Lynn

Eric,

My mom was practically eating nothing during her last 3 weeks of radiation. She had no appetite after her taste went away we had to force her to drink 1 can of Boost Plus a day which made her gag. She had no PEG TUBE and after she finished treatment I got this recipe from Mandi and she loves these shakes. If shes not in the mood to eat a bunch of food she makes one of these and they keep her going throughout the day. She is going to give all of her team of doctors this recipe. Try it out....

2 cups ice cream
1 cup whole milk
1/2 cup half-and-half
1 package instant breakfast
1 tablespoon malted milk
2 tablespoons Ovaltine

Blend well.

This shake provides 1300 calories per serving

If you can't get much down at least one of these a day should help. How much longer do you have to go? Mark the days off on the calendar and take it one day at a time. Be strong. I know there were days when my mom just wanted to die but now 7 weeks post radiation and chemo and shes doing fine!

Take Care,
Dani

Erik, I didn't have the tube. I eat oatmeal w/lots of sugar, and whole milk, also instant breakfast. I was a 120lbs got to 100 before everything was over, you will make it.

Thanks everyone! I have 2 more cisplatin & days of radiation. I'll try some of the suggestions. I can still eat salmon , Joanna. Last weekend, opening day we caught a 7 lb trout baked that baby just like salmon, mmm! THis morning I tried mixing a can of cream of chicken soup with chili con carne, tasted good , but was way too spicy, abort, abort!! Cream of chicken, tomato, & 1 can of milk makes a tasty smooth soup. Also, chicken noodle w/1 can tomato & 1 can milk works. Ivars clam chowder goes down real well & is full of calories & such.

Oh my gosh, Erik! I had forgotten that I just about single handedly kept Campbell's in busines from the amount of chicken noodle soup I ate, because I could taste the salt and the noodles slid down nicely. Haven't had any since. Trout? You had fresh trout? I am SO jealous. I have some Kokanee in the freezer that I now feel compelled to thaw out, but it won't be the same. Back to treatment, be aware that at the end, some people, like me, lose their voice for a couple of weeks. I was reduced to a very soft whisper and it took me by surprise because no one had told me this might happen. Now I can holler with the best of them, so it is temporary. Just keep your eyes on summer!

Erik,

I remember the salt taste well. It seems like it was just yesterday but it was 6 months ago. I found that spaghetti with Ragu (plain) seemed to work well for 2 months. The noodles went down good and the tomato taste was not too acidic. I tried some with cheese and some with sausage/meat they were a bit too strong. Plain old Ragu and Prego worked the best and it sustained me to the tune of 4 meals per day when even the Boost gagged me. I still lost an enormous amount of weight from 211 to 145 but I think thrush had a lot to do with it. Hang in there, the salt is the only single taste I remember towards the end. It came back within 2 weeks for me but 7 months later the tastes are almost a surprise each time I eat. The prime rib in March was the greatest I ever ate! A nice rare cut was easy to chew.

YOU CAN DO IT!

Ed

Hi Eric,
You're not alone hating that canned crap! Ensure & Boost made me gag! I ended up giving a few cases of it away to a convalecent hospital (poor old folks). I lived on Carnation Instant Breakfast and milkshakes. Carnation has an espresso flavored Instant Breakfst, unfortunately you have to buy the variety pack to get it but it's pretty good.

I didn't do the PEG thing. Food tasted like anything from cardboard to sh*t. It was the worst part of the whole deal - not enjoying food for at least 1/2 a year. It passes.

I lost over 60 lbs and my wife freaked out too but it's ok now.

You have a great attitude and that will carry you a long way!

About 2 weeks into rad/chemo, Don had lost about 15 pounds. I started making him a large malt every night and he only lost 5 more over the next 6 weeks.Then he maintained his weight until surgery and has lost 10 since then (cant have a malt) He's on ProtainXL through the PEG)The shake was YUMMY even to me. I gained weight just MAKING it! It was "by guess and by golly":

3 LARGE scoops good ice CREAM "not icemilk - check the ingredients"
1 can EnsurePlus
1/4 cup half & half
a good splash whole milk
Heaping TBS Carnation malted powder
2 strong sqeezes of Hershey's syrup
Blend in the Oster and pour in a large soda glass. There would be about 2-3 "fingers" left for the cook. That's how you gain weight MAKING it.

Gary,

I gave away a bunch of Carnation Instant Breakfast just because I only liked the espresso version. I started putting a couple of shots in the other stuff and it wasn't too bad. I also gave away 6 cases of Jevity Plus because at the time I thought I would never be able to get past the gag reflex. I ended up buying a lot of Boost Plus later because the taste become tolerable and then I actually started liking it. In Texas, or so the home healthcare agency told me, you can only donate it to organizations that give it to other countries. They conveniently had one they work with.

Jeepster, I may have to try one of the shakes it sounds so good. I may add some espresso for the coffee flavor I crave so much.

Ed

Eric,

Have you heard of the cookbook, 'Easy-to-Swallow Easy-to-Chew COOKBOOK"? I heard about it from a post earlier and since I had a birthday April 7, I took advantage and requested it. There was an email address on the post and they mail it to you with payment back after you receive it. My wife ordered it from Borders. It may not help as much now as it will later but it gets into some of the mechanics of swallowing and has some great recipes.

Ed

Hi Ed,
Me too especially that strawberry (?) Carnation stuff). I tried adding some canned Starbucks espresso to vanilla Instant Breakfast and that kind of worked. Try a few scoops of Hagen Daz coffee flavor ice cream in it - that works even better.

If I have to drink Ensure or Boost when I get old -I will kill myself first - Manufacturers - I hope you're reading this!!!

Gary don't do this to me I'm waiting to hear what the next treatment for me will be.. don't scare the S### out of me before I'm started... when I've had previous laser surgery I had to live on canned macaroni cheese.. it was the only thing that would slide down and not burn to much.. and the idea of another 3 weeks is YUK... and you are saying there could be worse to come.. thanks pal.
take care don't work to hard for the nest week.
Helen

To look back, there wasn't food that tasted like cardboard or metal or very unpleasant to me during or after treatment. The taste of some food has definitely changed (even water was different)but I never hated any food that I could eat at that time. Sometimes I held my nose and closed my eyes if I had to eat or swallow things that I didn't like. I had the same kind of food for over 3 months (2 times a day): minced fish in congee. Very boring especially when seeing the variety of food others ate. I just told myself that every bit of food I took could save my life. Up to now, I don't have a strong feeling against any food that tastes strange. Compared with other side effects, I always tell others that the loss of taste is the easiest I can cope with. See how people react differently.

Karen.

Canned macaroni and cheese? Sounds like you guys in the U.K. managed to one-up us on spam!

The book uptown is talking about is located on this website under the products for patients section

It's not the taste of food that I struggle with, it's the "feel" of some things that I eat. Such as a baked potato........I used to LOVE these and while they taste good, the texture in my mouth takes away my enjoyment in eating one. I have always chalked this up to a lack of saliva. I still have a pretty good amount of saliva, but it's thick and ropey. I was eating just fine after my surgery, it's the radiation that put a damper on my appetite.
Minnie

I still had to eat my sushi but I learned that the rice turns to glue if you don't keep the water and tea coming. When I was young, my mother made glue from rice and water for all of our school projects and every time I eat sushi, I think about that.

As a manly man, when I used to get up in the morning I always let out my morning expurgation (spit) but I tried to do it very quietly so as not to disturb the snoozing wife and gross her out. It just doesn't work now and I think I miss it!

Ed

Hi Helen,
there's nothing to be scared of - it'll be a minor inconvenience for only a little while!
We all have different experiences anyway -yours may be indeed more like Karens and we had almost the same identical treatment.

I don't think I said that "there could be worse to come", but from the jist of most of the posts here (and the reality of it) it can always get worse before it gets better. Fearing it will not change the outcome. I did enough research prior to treatment to know pretty much what to expect. It was a double edged sword. It helped me to prepare ahead of time but conversely I wasn't exactly looking forward to the immediate either.

Take it one day at a time.

PS Some people LOVE Ensure and Boost -just not me!

Hey, Helen, you know if you don`t handle this next detour appropriately, there will be no new broomstick for you, let alone, a new jet propelled one..........and you know how unstable we become without a good flying broom, mine must need an overhaul, I may be unstable, but, get on it lady, and we`ll trip to the moon together.................WW of the North

Hi All
Thanks.. don't know until next Friday what the big plan is.. only know it be good to know what they are planning... two holiday weekends here in the UK have messed up the Monday head and neck clinic so have been switched to another consultant.. but they are all good so no problem.. my current broomstick is powered by red wine.. so yep Dee will be good to be on the back of yours..
WW of the East...

Hi Everyone, I have ten more rads and one chemo left. It's had it's ups and downs 2 cases of thrush and constant constipation. But I'm coming along. I'm one of those who like Boost Plus !!I add Instant Breakfast to it with soy milk and Yogurt. I try other things but I just can't get them down.It's a strange feeling for a professional chef to have no desire for food. I keep reading about food to see if I can connect but no luck..I'm not looking forward to chemo this week,every 2 hours sick with throwing up stomach acid. Any suggestions from anyone?? Thanks a million, Tom Roussell

Hi Tom,

Join the club, I was sick enough that I knew deep down that hundreds were going through this without getting sick...based on statistics, that is. Drink lots of fluid to dilute the acid. Water down, water up...

Good luck and just remember, only one more chemo treatment and you have made it!

Ed

The only thing I really enjoyed during that time was Starbucks rasberry frappachino's made with half and half and whip cream on top! Delicious, fattening and I didn't have to feel guilty bacause I lost 45 pounds and they wanted me to gain weight!! It has been 20 months since treatment and have gained most that weight back so I have to stay away from those treats! I know, not too healthy but it got me through radiation! :-) - Kris

Hello,
During my treatments and for a while afterwards I could swallow nothing and depended totally on my PEG tube. As I gradually began eating, and even now I still live mainly on matzo ball and chicken soup from the deli, Boost Plus and wonderful chocolate milk shakes that I make at home with Homemade Vanilla Blue Bell Ice Cream from the little creamery in Brenham, Texas. Apparently Blue Bell is sold in 18 states. The other day Dreyer's Grand was on sale so I bought some and the shake did not taste nearly as good as with Blue Bell. The ones I make at home even taste better than Baskin Robbins and Hagen Daaz at the store. Go figure. So many things that I used to love, like cokes, just have no appeal anymore. However certain desserts, like creme broulee from a nice restaurant taste as good as ever!
Now I can eat oatmeal and Rice Krispies with a banana, but it took a while to get to that point.

Danny G.