Hi,
My dad was diagnosed in November with Tonsil/Throat cancer. He was given a feeding tube prior to the start of treatments. He has had about 20 radiation treatments and 2 rounds of cisplatin so far. He is having an extremely hard time eating with and without using the feeding tube. He says that all food smells disgusting and has no taste so the food just gags him. He has very bad reflux so he feels like everything that goes in the tube is coming back up his throat, which then causes him to vomit. He has lost about 27 pounds since beginning the treatments because he has been unable to eat food or to get anything to stay down using the tube. He is slowing trying to get the formula that the doctors gave him to go down the tube. The formula is staying down okay so far but he is only taking very small amounts at a time. Does anyone have any suggestions on food that he may be able to eat or any kind of shakes that he could possibly drink or put in the feeding tube? Also, is there a certain position that he should be in when putting the food down the tube?

Thank you from a concerned daughter..

Hi mlg121-
This sounds a lot like what my husband is experiencing, you are not alone! Sounds like my hubby is about 10 days ahead of your dad in treatment - 3rd chemo is tomorrow, and he's at about 25 rads so far.

Food/drink by mouth became pretty much impossible about a week ago. Prior to that, everything tasted vile to him. Even water, though he still sips a bit of water. While he was still able to eat, I tried all kinds of things - made sorbet with pureed fruits, pureed and strained soups, etc. Whatever worked "that day" didn't last long, so just keep trying different things, no solution will be permanent.

My husband is on Jevity, and he isn't digesting it well. He is taking FAR LESS than the nutritionist advised and has lost 30+ pounds, but he had plenty to spare, so the docs aren't too concerned yet. It sits in his tummy like a gut bomb and goes nowhere. After a couple of hours, his body just says, "Nope! Don't like this stuff" and up it comes.

So, against the advice of the home health nurse who taught us about the PEG tube, we're putting things OTHER than Jevity down the tube. Mainly Ensure and also those Naked-brand smoothies you can buy in the produce section. I strain them through a fine sieve and then thin them a bit because some of the flavors are pretty viscous. Again, the nurse advised against this, but we're doing it anyway because it keeps him from vomiting. He's still getting in 1-2 cans of Jevity a day along with the juice and Ensure, and plenty of water.

He also is putting mint tea thru the tube. Never one to believe herbal/wholistic medicine, he DOES swear that this has helped to settle his stomach. I lace it with plenty of honey for a bit of extra calories/nutrition.

All of this, as you are probably learning, has to be carefully timed... besides timing it w/ the meds, he also has to not eat if he has any plans to clean his mouth/throat in the next hour or so, as that causes gagging/retching, and then the food comes up. He waits until his stomach is empty, cleans his throat, then rests/recovers from that, then starts in w/ food & meds (crushed). By the time he's done, he's pretty tired, and the pain meds have kicked in and he sleeps for a few hours. Then, wakes up and starts it all again.

Also, my husband feels "full" after only about a 1/2 a can, so it's a struggle to get much in to him. He has to try several times a day - it's a career, LOL.

Good luck, hang tough, and your dad is lucky to have you!

Hi Mig121

My mother is also on Jevity. It seems to be working well for her. The only problem is its not to high in calories. My mothers cans are only 250 calories per can and her stomach only holds 3 to 4 cans a day. That's not to much in calories when that's all the intake she has. My mother has also lost about 50 lbs since she was diagnosed almost a year ago.

If the formula you are using is kind of thick then I was told you can add water to thin it some. That may help the vomiting stop.

My mom take Prilosec everyday for the acid reflux. The only thing my mom is able to eat by mouth is soups and very soft foods with gravy. Its been a really hard battle.

Also I find it easier for the feeding tube when my mother is laying in bed on her back with a couple of pillows under her head. The formula seems to go down well in that position.

Best of Luck
Heidi

There are different varying calorie counts of prescription formulas. Speak with a dietitian about the intake issues. They may be able to prescribe something with more dense calories.

Be very careful if using things besides what is prescribed in the tube. The formulas are designed for the tube. Other things may not be and could cause the tube to clog or break down. Always rinse it thoroughly after any feedings to help avoid problems.

Best wishes!

Hi guys. I really feel for you all, particularly for poor mig's father - been there, done that, everything stinks and tastes awful and ugh.

I'm not too sure what the feeding tubes you have are. I had one direct to the stomach with food that was introduced from packs by a pump - so I was attached to the pump machine for x hours a day, is that right? because the packs you talk about sound very low level, he should be able to get enough goodness a day from them. But it rather sounds like its a mechanical process? I'm not sure, I only have the French vocab...

If you are talking about pumped-in foods, a prime thing is to take it slowly. The faster you pump it in, the faster it comes back up. It is better to be attached for a long time and keep it down.

The hospital/nutritionist should be able to work with him to get it set at a speed - and using a suitably nutritious product - that will allow him to get adequate nourishment comfortably. I had to spend a couple of days in hospital a few times while they fiddled with the speeds. Basically slow it right down, and speed it up bit by bit (over days) until it reaches a no-no stage - take it back to the previous speed.

If he can, pumping it in overnight is good - so it can take 8-10 hours to slowly introduce a day's worth of high nourishment. Then he is free for the day. But he may need to sleep slightly propped up, or may not be able to do it - in the which case, similarly slowly but during the day.

Note: cold food smells a lot less. If possible, try cold soups, things you can eat as cold snacks, etc. If he gets a sweet tooth go with it! all sorts of custards etc - and especially high protein etc. creamy deserts. Keep fish of any sort - and frying - at several miles distance!!

Second thing: courgettes. Oh - zuccini. If there are actual issues with swallowing (not sure there are), courgettes are the Wonder Veg. They cook soft and help everything to slide down!

Third thing: mouth washes with bicarb of soda. Helps the bucal health and generally the taste of everything.

I lost a lot of weight, despite all this - you try not to, but you do. Really, you just have to keep trying and to remember, it is because of the treatment and it DOES get better. Really.

My husband couldn't digest jevity but does ok with osmolite. The dietician told us there are quite a few formulas to try and it can be an individual thing in terms of what agrees with you. Ensure plus has the same calories, protein, etc. as osmolite 1.5, but not all the trace minerals. Jevity has more fiber.

For us, it helped a lot to use a pump overnight at a very slow rate. The head of the bed is up on blocks to keep him at about a 30 degree angle.

Hang in there! It gets better.

Yeah some formula's suck. I never did well with the tube. In fact every time I tried to use it I vomited - So I gave up and set about sucking up the momentary pain and chugging my formula. I had bilateral radiation, and chemo - so as the rads guy said... there was more fall out from the extra rads. Regardless I felt okay. I mean compared to others. It was horrid, but doable. Maybe try to get him to do a high calorie high protein shake by mouth. They're bland and will hurt like the devil, but if he takes some magic mouthwash just before he drinks it - he should be able to get through it with minimal pain.

Hugs and best of luck.

Yeah some formula's suck. I never did well with the tube. In fact every time I tried to use it I vomited - So I gave up and set about sucking up the momentary pain and chugging my formula. I had bilateral radiation, and chemo - so as the rads guy said... there was more fall out from the extra rads. Regardless I felt okay. I mean compared to others. It was horrid, but doable. Maybe try to get him to do a high calorie high protein shake by mouth. They're bland and will hurt like the devil, but if he takes some magic mouthwash just before he drinks it - he should be able to get through it with minimal pain.

Hugs and best of luck.

Hi Mig121,
your post took me right back to where I was 12 months ago. I was on an NG tube and the Jevity which after lots of experimenting I found best taken at night on a very low speed , like other people here I needed to be propped up almost up right on 3 pillows. I couldn't manage the dietician's recommended in take it over loaded me and I was very sick for a good few months. I was offered complan flavoured milk shakes but they made me very sick and something in them stung my mouth like mad, so had to give up on them. Vicious circle I know , nutrition and hydration rightly drummed into you as essential so your very conscious and aware of this , forcing yourself everything tastes vile and your full and bloated . I promise you it does get better , one day something somewhere just clicks and is a little easier or you don't feel quite as bad , and from this point on , each day gets better. I hope this day comes soon for you. Water at this stage tasted very salty but I use to force small sips down. Taste for me now is very altered still , can taste savoury , bitter and sour but not the same as it was before but similar , still have no sweet taste whatsoever . One of the first things I could manage to eat was courgettes and mushrooms , custard rice pudding and soft eggs the textures I managed and taste reasonable but everyone is different . Hang on in there thinking of you.

Hi Mig121,
your post took me right back to where I was 12 months ago. I was on an NG tube and the Jevity which after lots of experimenting I found best taken at night on a very low speed , like other people here I needed to be propped up almost up right on 3 pillows. I couldn't manage the dietician's recommended in take it over loaded me and I was very sick for a good few months. I was offered complan flavoured milk shakes but they made me very sick and something in them stung my mouth like mad, so had to give up on them. Vicious circle I know , nutrition and hydration rightly drummed into you as essential so your very conscious and aware of this , forcing yourself everything tastes vile and your full and bloated . I promise you it does get better , one day something somewhere just clicks and is a little easier or you don't feel quite as bad , and from this point on , each day gets better. I hope this day comes soon for you. Water at this stage tasted very salty but I use to force small sips down. Taste for me now is very altered still , can taste savoury , bitter and sour but not the same as it was before but similar , still have no sweet taste whatsoever . One of the first things I could manage to eat was courgettes and mushrooms , custard rice pudding and soft eggs the textures I managed and taste reasonable but everyone is different . Hang on in there thinking of you.