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Feeding Tube

blondie41
Posts: 6
Joined: Jan 2014

My husband has stage 1 tonsil cancer, due to HPV.  He only has to go through 6 weeks of radiation, no chemo thankfully.  He is in week 4 and has not had solid food in 2 weeks, but is drinking Shakeology, ice cream and the ocassional chicken broth.  The doctor told him he should only lose 2 lbs a week, which is ridiculous considering he can't eat!  So far he's lost almost 10 lbs. 

He has told me that he will not (unless the doctor holds him down and forces him) get a feeding tube.  Reason being is he doesn't want to be reminded forever about what he's going through.  We have had a few heated discussions about this, because I don't want him to lose too much weight and get sick.  I haven't personally experienced what he's going through with all the pain and mucous and being hungry all the time, but I believe that if it were me, I would want the feeding tube to help me.

Thoughts?  Am I wrong in my way of thinking and caring?

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

but that really isn't a number carved in stone.  What he needs is fluids and calories.  Nothing else is really important.  If he can get enough orally to get by, why bother with a PEG tube?  Especially if he's halfway done with rads.  I went through rads two different times, neither time did I have a tube.  I pushed the calories as far as I possibly could.  I didn't worry about drinking water or chicken broth, those dont have calories.  Every drink I took had an ensure or boost base, with whatever I could add to boost the calories as far as I could.  That way I got calories and water both, at least as much as my sore mouth would tolerate.   I was able to keep my calories above 2000 per day, which is't enough to keep from losing weight.  I lost a lot of weigh at the end of treatment, but so what.  Better times came eventually, and the weight loss stopped.

 

Pat

blondie41
Posts: 6
Joined: Jan 2014

Thanks Pat.  The problem is that he's not trying to push the calories.  He can't stand Ensure or Boost, therefore won't use them!  I've begged and pleaded, but if it doesn't appeal to him, nothing is passing his lips!  I'm guessing that he's getting a 1,000 calories a day, at most.

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

You can always put other stuff through the blender.  Here's a fairly direct substitute.  8 ouces whole milk, one tablespoon olive oil, one scoop protein powder, one tablespoon sugar or honey, grind up a vitamin, add a little thickener if desired, flavoring and serve.  I tried a whole bunch of things, just to find stuff I could handle.

 

Respectfully, you will notice I have said I did these things.  Not someone else.  At some point, I figured I was pretty much responsible for my own situation. 

 

best to you both.

 

Pat

donfoo's picture
donfoo
Posts: 1428
Joined: Dec 2012

Welcome to CSN. Glad you joined and asking for some insight. Many here to get some firsthand knowledge. There are only three things necessary to do well to get through treatments with the fewest issues.

NUTRITION -- HYDRATION -- PAIN MANAGEMENT.

He has to consume sufficient calories to minimize the weight loss. I am in the no PEG mindset and was able to make it through without one. I did lose a lot of weight which I had to spare. Strarted at 178, finished at 140. I could have kept more on but I controlled my nutrition uptake to match my target. I could have stopped at 150 but wanted to take off that last 10. If he can afford to lose another 20 pounds then maybe he can make it. The doctors will surely be on him to get a PEG though. They do not like a lot of weight loss even if one has the extra on board.

He has to drink at least 30-40 ounces of liquid a day. That is essential. He will get dehydrated in an instant and be in ER getting saline.

Depending on how difficult eating and swallowing is makes managing pain a very big deal or not so big a deal. In any case, no reason to suffer through this. Take the narcos if the pain is there.

Getting the calories in is easier with calorie dense foods. It may be harder to swallow but anything fatty has twice the calories as carbohydrates. You can try whey protein powder as that is a good way to get calories. Look around for the dieters AVOID list and make that your EAT list as they typically contain high calorie items.

Again, if nothing else, he has to drink enough fluid or he is headed for trouble. Good luck, don

 

 

MarineE5
Posts: 789
Joined: Dec 2005

Just to add to Pat's suggestions already. Has he tried eating some scrambled eggs with some Sugar free syrup on them? I would do this and the syrup helped the eggs slide down easier. Also, mix in some instant breakfast mix in some milk, throw in a banana, the kitchen sink if you have too Smile. Anythng that will provide nutrition and calories as Pat mentioned. I ate hot oat meal allot, of course, I allowed it to cool to room temperature as my mouth was sore from the Radiation. Soft boiled eggs, you get the picture...

Does he use the Baking Soda and Salt solution to rinse and gargle prior to eating? I used this method to semi-numb my mouth before eating or drinking. It took the edge off of that or the use of Magic Mouthwash? As Pat stated, your husband is closing in on being finished with the Rad's and possibly get thru this without the PEG. I had no choice and had the PEG from the start as I had Base of Tongue cancer and had part of my tongue removed and was not allowed to eat orally for weeks.

My Best to Both of You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 3316
Joined: May 2012

blondie41,

Your husband knows what he needs to do, consume calories as Pat & Don instructed.  While I did have a PEG I always drank at least one meal a day.  I did not like food much, but who cares, that is why there are smoothies and protein drinks.  So it takes a while to gag down a drink, you have the time and need the calories.    

I took the bull by the horns and fought my battle as best I could, however I could.  Your husband needs to get the mindset that this is a winnable battle and do what he can.  He is half way through; it will be over soon, he will get better.

Don’t worry about the PEG scar being a reminder; it is far down the list of reminders.

Matt

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I cannot understand the doctor's recommendation since many of us lost a lot of weight.  Based on his recommendations, here are some suggestions.  Boost is my daily breakfast since I can only eat soft foods.  I liked it better than Ensure and am now used to the taste.  Prior to tolerating it, here are a few things I did with Boost.

1.  Mixed a tablespoon of Hershey's Cocoa in about 3 tablespoon of hot water or just enough water to dissolve it.  Add one can of boost, stir and microwave it.  It tastes like hot cocoa.  Not bad and it was my best drink.

2.  Same as above, but used instant coffee.

3.  Mixed a scoop or two of ice cream with one can of boost.  Blend with the straw or a fork.  Add a couple cubes of ice if desired.

Good luck and hope he tries and enjoys it.

debbiejeanne's picture
debbiejeanne
Posts: 2962
Joined: Jan 2010

your husband needs to do what is necessary to try to maintain weight but he will most likely continue to lose no matter what.  unfortunately i think that's just another part of having cancer.  welcome to our club that nobody chooses to be a part of.  you will find this a great place to be for questions and answers as well as info that can help your husband thru tx. 

God bless,

dj

blondie41
Posts: 6
Joined: Jan 2014

Thank you everyone!  I'll pass along all of your suggestions.  He's been batteling an upset stomach the past couple of days, hopefully that'll pass and I can get some calories in him!

hwt's picture
hwt
Posts: 2205
Joined: Jun 2012

It's going to take nutrition and hydration to avoid the tube. I did not have a PEG, instead a g-tube. During the worst part of radiaiton, I had about 6 Ensures through it everyday. I don't think you could put food in it.If so, they never told me that.  My only reminder is a small scar under my breast. So minor in the scheme of things. I lost 65 pounds. Others have mde it without a PEG or g-tube but your husband has to get his nutrients. Try fruit smoothie from Burger King or the like. Malts, shakes, I only like the milk chocolate Ensure and it has to be chilled. Milk seemed to help food go down. Baked potato loaded and pancakes w/loads of syrup worked for me. Things that should have worked, like mashed potatoes and mac & cheese had to be the perfect consistancy or they were out. Good luck

phrannie51's picture
phrannie51
Posts: 4050
Joined: Mar 2012

have said what I have to say.  One.....he NEEDS to push calories and hydration to their limits and beyond.  It's hard to imagine not liking Boost or Ensure, when at this juncture he most likely can't taste anything anyway.  I used Boost VHC (very high calorie)....that way I could suck it down and be done with 540 calories in 8 little ounces.....13 or 15 swallows, and it was over....Shakeology is packed with vitamins, and mixed with milk to add calories is fine.....but it's not very high in calories. 

Like Pat said, the 2 lbs a week is just a number.....and not one that many people manage to keep....even packing in more calories isn't necessarily keep weight loss at 2 lbs a week.....the body is burning them at an excelerated rate during treatment.

There's damn little to "remember" about a feeding tube....it's not like it's permanent, and the scar is perfectly round and the size of a pencil eraser....and like Matt said, it's way down the list when it comes to reminders of treatment.....like at the bottom of said list.  A tube does make taking in water and food way easier if he's in pain.....bypassing where it hurts is a relief.....even tho he will still have to swallow something everyday to keep the swallower working.

You take it easy on yourself.....there's only so much "help" you can do with a cranky adult.....sometimes planting a seed, and seeing if it will grow works (that's how I do everything with my hubby, so it looks like it's his idea) Laughing.

p

Jims_wife
Posts: 4
Joined: Feb 2012

Hi Blondie41 -

I made a lot of shakes when hubby was undergoing treatment and used heavy cream, instead of milk to bump up the calorie count. When he could drink things, I mixed his Jevity, Boost VHC, and Boost Breeze in shakes along with chocolate protein powder - Mass Gain, I believe, has a protein powder that makes a 1,000 calorie shake. At one point, I had 1250 calories in a 16 ounce drink. It might take him an hour or two to get it down, but it was half the calorie battle for the day.

Our situations are different - my husband was stage 4, had a feeding tube and was undergoing chemo. However, when he could drink his calories, trying to find things he would drink to make up his 2,500 was always a battle. Even with a feeding tube, my huband lost 20 pounds from chemo related nausea.

I pureed his favorite soups and watered down yogurt with heavy cream. Small but constant feedings with as many calories as I could slip in was the best I could do for him.

While you are not wrong in your way of thinking and caring, you are not the patient. Respect his decision not to have a feeding tube, even if you would do things differently, after all, he's your husband, not your child. It can't be the first thing you've disagreed on and it won't be the last. My husband decided that heavy cream was bad because he felt he needed to watch his cholestrol in the middle of all of this.

I made a calorie chart, and we both worked hourly on getting him to 2,500 calories daily. It's the best you can do as a caregiver.

Just to let you know, we are now on the other side of this by a year and a half. Getting him back on solid foods was both a battle and a pleasure. He's eating pretty much everything except steak. We consider that his ultimate graduation food.

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