Beginning To Eat Again....Help!

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Beginning To Eat Again....Help!

by John1633 on Mon Nov 09, 2015 04:30 AM

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So my husband John finished 35 rads and chemo last week for SCC right tonsil and nodes. He has a feeding tube that he relies on for two meals each day. He can eat just fine with minimal swallowing difficulties. However, his tatste buds are gone and this kills the appetite as most of you know. He eats grits and eggs or a smoothie for breakfast most days. He can tolerate some soup like the classic Chicken Noodle. My question: when you began eating again, what foods were the most tolerable/palatable? How long after treatment ended did you begin weaning off the feeding tube? I've tried a lot of things that have ended up in the trash can. He tried egg noodles with butter tonight. Couldn't eat it. Yogurt or ice cream? Nope. Thanks for offering your experiences, Karen

RE: Beginning To Eat Again....Help!

by SameJourney on Mon Nov 09, 2015 06:01 AM

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My husband cannot tolerate cheese or butter, vegetables (beginning to tolerate honey glazed carrots), fruit. He is able to eat egg drop soup and garlic chicken. Surprisingly, he can eat shrimp/fish, breaded and unbreaded. Sweets was the first taste to come back (that taste is on the tongue tip). He could eat doughnut holes. Like your husband, he doesn't want ice cream...maybe because he was able to eat it during treatment and now, doesn't want it. Oh, chocolate does not taste good. My husband did not have a feeding tube and existed on Boost plus for about 5 weeks post treatment. I wish you well.

RE: Beginning To Eat Again....Help!

by gr0619064 on Mon Nov 09, 2015 10:20 AM

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Hi Karen

My dr would not take feeding tube out until at least three months after treatment and I was able to eat somewhat again. I ate lots of scrambled eggs cooked in butter. it does get better but he has to be strong mentally to get through it. I am 3 1/2 yrs out can eat almost anything but real spicy foods which I miss. Meat proteins will be one of the last things he will be able to eat. dry mouth does get better although will never be 100%.

Gary

RE: Beginning To Eat Again....Help!

by atcbugsy on Mon Nov 09, 2015 11:51 AM

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Hiya Karen,

I can tell from your posts John is doing great and on his way to his "new normal".  It's been hard work for both of you.  He's lucky to have someone like you as his caregiver.

Lipton noodle soup and (soft) grilled cheese sandwiches worked for awhile.  I say (soft) grilled cheese because you want the bread more moist than dry.  Runny scrambled eggs.  We would go to all the different shake places around town and see which shakes tasted best.  Yes, they all tasted different.  Anything with tomato sauce burned, so I avoided them.  Mac & Cheese was hit & miss.  Chocolate milk was great!  Try anything he might want to try.  They often sell individual sizes you can try without having to buy the family size box.  A lot of items I tried had the cardboard effect - first bite great, the rest was cardboard.  Popcorn is still like that for me.  But I try it about once a month.

I needed help with an appetite stimulant from my doctor.  I forget the name, but you can ask your Dr. about it if it becomes an issue.  I was also on anti-depressants for a few months and these also helped with appetite stimulation.  Both meds also helped me get off the tube, which helped my attitude considerably.  I never worried about becoming dependant on the drugs because my Dr. told me she wouldn't let that happen.  Her priority was helping me get my appetite back, get off the tube, and find my "new normal".

One thing to remember as you continue the healing process... what doesn't taste good today may taste good tomorrow.  Remember, this is a s-l-o-w recovery process so try not to get discouraged and remember, John will recover.

Best of luck.

Bugsy

RE: Beginning To Eat Again....Help!

by JohnnyO on Mon Nov 09, 2015 06:52 PM

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Everything tasted terrible or like nothing.  I forced myself to eat in spite of it and went for high protein or high calorie foods.  I just posted elsewhere that my wife would make me big steaks, which were tolerable though tasteless, and I would sit for two hours to finish.  I had no feeding tube.

One night she made me spaghetti and clam sauce, and I literally cried because I could actually taste it and it tasted somewhat good.

I supplemented with Ensure (chocolate was all I could keep down); sometimes just drank a bunch of Ensures to keep me over 2000 calories a day.

RE: Beginning To Eat Again....Help!

by gr0619064 on Tue Nov 10, 2015 10:10 AM

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Hi Karen

I totally agree with Bugsy-I forgot about the Lipton soups -I also ate a lot of Ramen soups too for the soft noodles. Ice cream too but it tasted like metal. 

I did get a prescpition for tramadol(synthetic marijuana) for appetite but it didn't work

I did go on antidepresseants which helped a great deal

Gary

RE: Beginning To Eat Again....Help!

by augustus on Tue Nov 10, 2015 10:45 PM

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What everybody said above. Good advice up in here! I went through a food aversion thing for awhile. Not only was everything tasting bad, my weak mind decided all food was bad, since I threw up during the treatment so much. But I overcame that, had the tube removed after about 3 months and am starting to have a little better taste after nearly a year. I hate scrambled eggs, but like over easy eggs on top of toast or pancakes. Nothing spicy. Beer taste came back- Hallelujah! And chocolate is making a slow comeback. Maple syrup helps on nearly anything. By the time evening rolls around, my taste has deteriorated some. so I eat a big breakfast now. Pancakes, eggs, very mild sausage, bacon and grits a lot. I also make a lot of biscuits and gravy. But not hash browns. I am still skinny from the treatment, so I am not worried about what I eat yet.  I was never a picky eater before, but I am now. I don't like ice cream anymore. Has a "wang" to it now. But maybe "tomorrow" it will be good again. One thing I did do was start cooking more. It has become a lot of fun. I watch the cooking shows and read recipe books a lot. Anything that uses peppers, I pull off a little for me and do not season it.  I have to use my family and friends as tasters, though. They say it is good. But I don't trust them all the time. lol. 

RE: Beginning To Eat Again....Help!

by Sdurnell on Wed Nov 11, 2015 10:35 PM

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I could not eat at all for a lot of the first year out of treatment, so I missed this stage.  But many folks here have recommended going to a decent buffet restaurant and trying little dabs of many kinds of foods.  Saves on the make-it-and-throw-it-out episodes.  You can get a good idea of what you'll be able to taste, and what you can at least tolerate.  Then go back again every so often as the sense of taste improves.

Once things go from tasting terrible to no taste, start eating as much as possible.  No taste is far preferable to the perverted tastes we have at first.  For a while I could only taste the first bite of a food--another good reason to go to a buffet, maybe, and take little helpings of many things.

Good luck.  This stage is not fun, but it shows that healing is in progress.

Susan

RE: Beginning To Eat Again....Help!

by dlfraserxx on Sat Nov 21, 2015 06:16 AM

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I had my PEG tub 3.5 years and was very thankful for it as anything via my mouth was nausiating.  My swallowing was ok and I tried to swallow a little food every day and chewed gum (the stuff that is intended for dry mouths) a lot to make myself swallow.  My siliva started comming back at about 2.5 years and I was getting some decent tast 6 mo. later.  All along I was trying different foods (even when everything was bad) and when the taste started coming back, I did the same.  The first thing that I began to eat a lot of was Pannera Bread bagles with cream cheese (go figure).  My wife would steam them to make them extra soft.  That is a system that worked for me and now all foods taste ok, though not quite like before.  By the way, when the PEG tube needs to be replaced, ask for the "low profile" model -- more convenient and the Kimberly Clark model is easy to then chage by your self when the time comes (there are other brands, but KC worked best for me).  Another tip: the gum also exercises the teeth (down into the jaw bone) which is also important.  Good luck.

Larry

RE: Beginning To Eat Again....Help!

by Krkirk on Sat Nov 21, 2015 06:43 AM

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Hi I'm Kelly 

3 weeks out from radiation. Found out cinnamon life goes down ok and was surprised with a little taste. Will keep reading and will pass on any discoveries.

Good luck

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