I finished my chemo and radiation TX in late May. Pet scan showed "all clear" for now. Chemo port was removed several weeks ago, but PEG tube is still in. I am taking throat therapy via V STIM and I can now swallow fairly normally.
My big problem is that almost all food taken by mouth makes me nauseous (Like I have eaten too much) after two or three bites. I am trying to get off of the PEG tube, but can't afford to.
I have asked several of my Drs. about this, but all I get is a shrug of the shoulders and not much comment. I feel that this is all that is keeping me from conducting a normal life and would appreciate any suggestions.

Hi Philipp:

When I finished my treatments (radiation and chemo) for tonsil cancer in Jan 08, I had a PEG for about 6 months until it got infected - then it had to come out, so instead of having another one put in, I chose to swear to eat anything I could, which wasn't much. I would eat mostly things like potatoes and gravy that would slide down easy, sometimes, or soups. But, the biggest thing was I supplemented with an idea I got from this forum. It's Carnation Instant Breakfast VHC which has 560 cals in a small 8 oz can. All you have to do is drink 5 or 6 of those a day to get the calories you need. You can get them over the Internet (which I did and it took only about 3 days), or from the pharmacy depts of places like Walgreens or CVS. Be sure to get the VHC (Very High Calories) variety. After all this time, I still have to have my esophagus stretched occasionally, and I have to wash most of my food down. I, too, have no appetite and become nauseous even thinking of eating, but I FORCE MYSELF TO, AND YOU CAN TOO. Take your mind off eating while you eat, watch TV, or read, or do anything other than think of eating

julieann

Thanks Julieann - I guess that I was hoping for some magic solution. You are saying almost the same thing that my wife says - "Just do it!". However, after my attempt last night, I thought that I was going to throw up after only two bites.
Yes, I am doing the Carnation breakfast - 560 calories thru the tube. I tried drinking one, but it was very thick and creamy (usually a good thing)and I could not drink much of it. It seems like the only thing that does not make me sick is the little cups of pudding - bananna & butterscotch flavored. Maybe it's just going to take a longer time than I thought.

Philipp

Try mixing the VHC half and half with whole milk. I drank that stuff with every meal every day into my 2nd year post Tx just to make sure I was getting 3000 cals a day. I never had a PEG so I was forced to "eat" the entire time. By week 3 post Tx I was eating mashed potatoes w/ gravy, fruit cocktail, mac n cheese and I never did get a nausea feeling from eating.

BTW even with 3000 cals a day I didn't gain a pound my first year. Just tells me how much behind the scenes energy my body was using in my recovery stage.

Also, Philipp, I mix a bottle of chocolate Boost Plus (360 calories) and either milk or half and half together with the VHC, and that makes it taste not so vanillary (is that a word?) or chocolatey (eh? you know what I mean). I drank so much Boost Plus in the chocolate flavor since I didn't like strawberry or vanilla, before I found out about VHC, that I almost got turned off on anything with a chocolate taste. Mixed with the vanilla VHC it's tolerable. Drinking with a straw also makes it go down easier

julieann

Well, maybe I'll try to get john to try the little cups of pudding; he has a similar problem with constant bad heartburn, nausea, bloating, esp after 'eating' even a can of the liquid food, or when he tries to eat something by mouth. This is even with his meds. Some days are worse than others; and he ate an In-N-Out hamburger once without too much trouble, though very slowly, but then other times even a cpl bites of some innocuous seeming food causes dry heaves, severe heartburn, etc. He almost dreads doing the cans b/c he almost always feels bloated and nauseated afterward. Have tried otc Boost and Ensure Plus as well. I haven't seen the Carnation VHC in stores but it doesn't sound like a prescription; is it hidden behind the pharmacy counters or does one have to order it on-line or something? J is continually to very gradually lose weight which is no good!

I got my Carnation VHC on the Internet. I checked with our local Walgreens but they were supposed to try to order me some but I never heard from them. The CVS Drug Store did likewise. So, if you can't find it or your drug store can't order it, try the Internet. It only took about 3 days to get here. It only comes in vanilla, and like Philipp said, is sort of thick, so John may want to mix milk or chocolate Boost with his. Did he try drinking it with a straw? Seems easier to get down for me that way. I, too, sometimes feel a little nauseated after drinking it down, so I put one or two salty oyster crackers in my mouth that totally changes the taste and eases the nauseous feeling. Hope some of this helps. Also, with the little cups of pudding, try some of the little cups of jello for a different taste - it slides down pretty easy.
julieann

Phillipp,

I had exactly the same problem! The docs and the nutritionist had never had a patient with the same problem. And yes, it definitely slowed down my return to 'normal' life and was incredibly frustrating! So, I would just eat what I could, as much as I could until, eventually, it didn't happen any more.

You have to start thinking about eating by mouth as exercise. You don't want to it, you don't like doing it, but you just have to.

Good luck to you.

- Margaret

Hi
Eating is a problem. I got so used to squirting my feed through my peg that I almost forgot what eating was about. I was constantly told to get used to eating by mouth, but during treatment and for some time after anything I ate tasted awful and the inside of my mouth was so swollen that I was constantly retching if I took too big a mouthfull. It gets better, the mouth becomes less sore, swallowing is easier but food remains a disappointment, tastless at best, horrible at worst. The worst one was strawberries which smelt so beautifull but tasted awfull.
I discovered a UK website (myprotein.co.uk) which was aimed at bodybuilders and sold various powders which I have been transforming into a drinkable and very nutricious smoothy. Too many of the made up "meal-in-a-cup" drinks are either too sweet for me, or too expensive or just horrible. I get powdered oats, barley, wey protein, flax seed powder, echinacea, green tea extract, essential amino acids, riboflavins etc. The available list is huge. I mix these up with a hand held blender with a banana, milk, cream, Actimel, and anything else that catches my eye and wizz it up into a meal which has a fairly neutral taste, is filling, provides all the carbs, proteins, fats, vits etc that you want, without anything you don't want at a reasonable cost. I'm sure you can find something similar to you locally.
If I'm travelling or going somewhere I don't know what the food situation I make up a couple of smoothies in case there isn't anything I can eat. It's very liberating.

Finally, after 4 or 5 months, I am beginning to eat real foods by mouth. I think one of my problems was the lack of appetite. My Med Onc. prescribed Megace for me to tske one tsp. per day. That and my Vstim treatments have worked wonders. I am eating just about anything (No popcorn yet) but apparently my stomach has shrunk and I have to eat 4 or 5 times per day to get enough to sustain my weight. The taste is still not right, but at least the food does not make me sick anymore. I am scheduled to have the PEG tube removed in a couple of weeks. Hooray for that! I told my wife last night that I was like a kid with a new toy - able to eat again. One problem now is that she got used to not having to cook and prepare meals ffor the two of us.

Philipp,
Enjoy being back in the world of the eating it takes a while for foods to taste the same some may never be quite the same
but after 2 years of trying to get me to eat my MD is now saying enough already It is so nice to taste food again I have gotten carried away and have gain back more weight than I lost
best wishes and happy eating.

I agree with Margaret. Eating is just like exercise - just do it. I ate smooth soft foods - eggs, mashed potatoes and soup. I was not able to swallow the "thick" liquids like Instant Breakfast, Ensure or milkshakes. Too much like the mucous I had suffered with during treatment. Still now, I only drink water. I actually lost more weight after treatment when I began eating than I did during treatment when I was using the PEG exclusively. My suggestion is just be stubborn! Make yourself eat several times a day, small portions and soft foot. If you wait until you are hungry you may wait a long time. Now almost 6 months post treatment, I still have no appetite. I eat because it is time to eat. No mental thought of "oh I am hungry". Eating is just something I have to do.