Nutritional supplements when weaning off PEG

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buzz99
buzz99 Member Posts: 404
edited March 2014 in Head and Neck Cancer #1
I am the wife and caregiver of Buzz who completed treatment on January 10 for Stage IV BOT cancer. I am trying to get him off the PEG and would like advice on what supplements are the the best ones as well as the best place to buy or order them. Walgreens and CVS seem to be pretty competitive on price for Boost Plus and Boost Pudding. Buzz tolerates the Boost Plus (vanilla) ok but really does not have much interest in eating. He says that most things sting his tongue but he is swallowing ok. He does not even tolerate Strawberry Instant Breakfast as it stings (although the vanilla is ok). Also, there is a product called Resource Breeze which is fruit flavored and has 7 grams of protein. He won't drink water (tastes bad) so I have been giving all of it via the PEG. Maybe the Resource Breeze would taste better to him. Would appreciate any suggestions! Thanks!
Karen

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  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
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    All good ideas.
    Karen,

    An important thing to remember is that Buzz, like me, probably won't have much of an appetite for a while after weaning from the PEG. Took me a while for it to come back. The important thing is to go ahead and eat anyway. In time, appetite comes back, and the discomfort will fade and taste will improve.

    Deb
  • DrMary
    DrMary Member Posts: 531 Member
    #3
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    D Lewis said:

    All good ideas.
    Karen,

    An important thing to remember is that Buzz, like me, probably won't have much of an appetite for a while after weaning from the PEG. Took me a while for it to come back. The important thing is to go ahead and eat anyway. In time, appetite comes back, and the discomfort will fade and taste will improve.

    Deb

    A few suggestions
    We had the "bad tasting water" issue also - does that include bottled water? Doug was finding tap water bad-tasting, possibly because of the chlorine or the metallic taste from the tap. He did OK with bottled water and with water from our Brita filter pitcher. Club soda might also taste better to him than flat water (Doug also found that it helped clear mucus better).

    I've given this recipe before, for our basic milkshake - in the beginning, it was the only thing that didn't sting or have funny tastes: 1/2 cup CarboGain (maltodextrin powder), 1 scoop of BlueBonnet Whey Isolate - original flavor, 1 spoon of L-glutamine powder, 1 cup of milk, 2-3 tablespoons Torani vanilla syrup in a good blender. If you use 2% milk, that's about 500 calories and tons of protein (over 20 g, I think - too lazy to go check). If fat is not a problem and you are trying to get more calories in, add heavy cream - each tablespoon is 50 calories (in the beginning, I made these with 4 T cream).

    Watch out for stevia - I found it in a lot of whey powders as a sweetener. It gave us both sore mouths and throats. Obviously, you want to avoid artificial sweeteners also - he needs the calories and you don't want to risk reactions.

    If he can stand 3-4 Boost Plus per day, he is getting enough vitamins and minerals, so your only problem is to get the calories in.

    BTW, don't forget fiber - it's in a lot of the PEG mixtures, so if you are weaning him off Jevity or similar, you might want to get more fiber going in by mouth. You can throw Benefiber (or similar) in the milkshake if he won't do water.

    We found it helpful to have a plan - X number of boosts, Y milkshakes and Z oz. of water by mouth today, and then increase one of the numbers each day. He could see that he was going to be at full calories in 2 weeks and didn't have to try to do it all at once; each day, he just had to be able to do what he did the day before plus a small increase. That helped keep it from being overwhelming.

    It's still work. . . they should give out medals for this.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
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    DrMary said:

    A few suggestions
    We had the "bad tasting water" issue also - does that include bottled water? Doug was finding tap water bad-tasting, possibly because of the chlorine or the metallic taste from the tap. He did OK with bottled water and with water from our Brita filter pitcher. Club soda might also taste better to him than flat water (Doug also found that it helped clear mucus better).

    I've given this recipe before, for our basic milkshake - in the beginning, it was the only thing that didn't sting or have funny tastes: 1/2 cup CarboGain (maltodextrin powder), 1 scoop of BlueBonnet Whey Isolate - original flavor, 1 spoon of L-glutamine powder, 1 cup of milk, 2-3 tablespoons Torani vanilla syrup in a good blender. If you use 2% milk, that's about 500 calories and tons of protein (over 20 g, I think - too lazy to go check). If fat is not a problem and you are trying to get more calories in, add heavy cream - each tablespoon is 50 calories (in the beginning, I made these with 4 T cream).

    Watch out for stevia - I found it in a lot of whey powders as a sweetener. It gave us both sore mouths and throats. Obviously, you want to avoid artificial sweeteners also - he needs the calories and you don't want to risk reactions.

    If he can stand 3-4 Boost Plus per day, he is getting enough vitamins and minerals, so your only problem is to get the calories in.

    BTW, don't forget fiber - it's in a lot of the PEG mixtures, so if you are weaning him off Jevity or similar, you might want to get more fiber going in by mouth. You can throw Benefiber (or similar) in the milkshake if he won't do water.

    We found it helpful to have a plan - X number of boosts, Y milkshakes and Z oz. of water by mouth today, and then increase one of the numbers each day. He could see that he was going to be at full calories in 2 weeks and didn't have to try to do it all at once; each day, he just had to be able to do what he did the day before plus a small increase. That helped keep it from being overwhelming.

    It's still work. . . they should give out medals for this.

    My tongue and mouth were
    My tongue and mouth were very sore, still are, really. I was able to tolerate the resource boost breeze. Water still burns my mouth. I have found that I am able to tolerate some fresh apple and orange juice now, if I put in a tsp of L-Glutamine. I am glad I can use my juicer again. I just put in my liquid multi vitamin and immune booster in there. This way I know I am getting any vitamins I may miss in my diet. Water is also a better tolerated with a tsp of Glutamine too. Since I'm still too thin I drink coconut water instead of regular water because I need the calories.

    I too started slow. I added a little more each day very slowly. I no longer do any Boost or Ensure. I do drink a glass of Ovaltine everyday tho. I started with very soft foods. Things that did not burn my tongue. Like bananas, (still have one daily) avocados, sour cream, soft eggs, and super fine oatmeal, boiled sweet potatoes with butter, almond butter, milk, non fat greek yogurt, pureed beans, soft broccoli, pumpkin, and creamed spinach.

    They should give out medals. It's like the hardest thing I've ever had to do. Treatment is brutal, at least it was for me. Recovery is quite difficult too.
  • buzz99
    buzz99 Member Posts: 404
    #5
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    DrMary said:

    A few suggestions
    We had the "bad tasting water" issue also - does that include bottled water? Doug was finding tap water bad-tasting, possibly because of the chlorine or the metallic taste from the tap. He did OK with bottled water and with water from our Brita filter pitcher. Club soda might also taste better to him than flat water (Doug also found that it helped clear mucus better).

    I've given this recipe before, for our basic milkshake - in the beginning, it was the only thing that didn't sting or have funny tastes: 1/2 cup CarboGain (maltodextrin powder), 1 scoop of BlueBonnet Whey Isolate - original flavor, 1 spoon of L-glutamine powder, 1 cup of milk, 2-3 tablespoons Torani vanilla syrup in a good blender. If you use 2% milk, that's about 500 calories and tons of protein (over 20 g, I think - too lazy to go check). If fat is not a problem and you are trying to get more calories in, add heavy cream - each tablespoon is 50 calories (in the beginning, I made these with 4 T cream).

    Watch out for stevia - I found it in a lot of whey powders as a sweetener. It gave us both sore mouths and throats. Obviously, you want to avoid artificial sweeteners also - he needs the calories and you don't want to risk reactions.

    If he can stand 3-4 Boost Plus per day, he is getting enough vitamins and minerals, so your only problem is to get the calories in.

    BTW, don't forget fiber - it's in a lot of the PEG mixtures, so if you are weaning him off Jevity or similar, you might want to get more fiber going in by mouth. You can throw Benefiber (or similar) in the milkshake if he won't do water.

    We found it helpful to have a plan - X number of boosts, Y milkshakes and Z oz. of water by mouth today, and then increase one of the numbers each day. He could see that he was going to be at full calories in 2 weeks and didn't have to try to do it all at once; each day, he just had to be able to do what he did the day before plus a small increase. That helped keep it from being overwhelming.

    It's still work. . . they should give out medals for this.

    Thanks, DrMary
    Thanks for the recipe. I printed it and will try it. I am willing to try anything to get Buzz to eat! Karen
  • buzz99
    buzz99 Member Posts: 404
    #6
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    sweetblood22 said:

    My tongue and mouth were
    My tongue and mouth were very sore, still are, really. I was able to tolerate the resource boost breeze. Water still burns my mouth. I have found that I am able to tolerate some fresh apple and orange juice now, if I put in a tsp of L-Glutamine. I am glad I can use my juicer again. I just put in my liquid multi vitamin and immune booster in there. This way I know I am getting any vitamins I may miss in my diet. Water is also a better tolerated with a tsp of Glutamine too. Since I'm still too thin I drink coconut water instead of regular water because I need the calories.

    I too started slow. I added a little more each day very slowly. I no longer do any Boost or Ensure. I do drink a glass of Ovaltine everyday tho. I started with very soft foods. Things that did not burn my tongue. Like bananas, (still have one daily) avocados, sour cream, soft eggs, and super fine oatmeal, boiled sweet potatoes with butter, almond butter, milk, non fat greek yogurt, pureed beans, soft broccoli, pumpkin, and creamed spinach.

    They should give out medals. It's like the hardest thing I've ever had to do. Treatment is brutal, at least it was for me. Recovery is quite difficult too.

    Thanks Sweet
    Thanks for the suggestions, Sweet! The tongue stinging is pretty typical, I guess. Pretty much everything seems to sting Buzz. Good to know about the Resource Breeze. I did not want to order it until I talked to people in the "same boat" as my Buzz.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
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    buzz99 said:

    Thanks, DrMary
    Thanks for the recipe. I printed it and will try it. I am willing to try anything to get Buzz to eat! Karen

    Yeah, I ordered it from
    Yeah, I ordered it from walgreens and it does go on sale every so often so I stocked up then.
  • Scambuster
    Scambuster Member Posts: 973
    #8
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    buzz99 said:

    Thanks, DrMary
    Thanks for the recipe. I printed it and will try it. I am willing to try anything to get Buzz to eat! Karen

    Starting to Eat again
    Hi Karen,

    A tough time for sure. First, if not already, get some L-Glutamine Powder (1lb tub). Mix a heaped tea spoon in water and he will be able to drink water without pain. It will also help his mouth and throat heal plus many other good things. Leave a glass of this mix around so he can sip away all day. He can take a heap of that stuff with no down side so 4-5 heaped spoons a day is no problem.

    As for food by mouth, it will take a while so you just have to find stuff he can eat. He will need to try a couple of small things every day maybe off your plate - till you figure out what doesn't hurt. Having the Glutamine water on hand will neutralize the burning he may experience with many foods.

    I started with rice gruel which was easy to swallow and gave me some calories. I also started with a children's instant breakfast oats formula. I could also tolerate starbucks thickshakes and while they are not good for us, they are a way to start food by mouth. Mary's brew sounds great.

    You will have to be very patient as his lack of appetite and pain and possible depressive state all make it very hard at times. Just know this phase will pass and he will eat again. Maybe not all the same foods as before (hopefully only healthy foods) but he will get back to a reasonable condition.

    All the best
    Scam
  • rozaroo
    rozaroo Member Posts: 665
    #9
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    Scambuster said:

    Starting to Eat again
    Hi Karen,

    A tough time for sure. First, if not already, get some L-Glutamine Powder (1lb tub). Mix a heaped tea spoon in water and he will be able to drink water without pain. It will also help his mouth and throat heal plus many other good things. Leave a glass of this mix around so he can sip away all day. He can take a heap of that stuff with no down side so 4-5 heaped spoons a day is no problem.

    As for food by mouth, it will take a while so you just have to find stuff he can eat. He will need to try a couple of small things every day maybe off your plate - till you figure out what doesn't hurt. Having the Glutamine water on hand will neutralize the burning he may experience with many foods.

    I started with rice gruel which was easy to swallow and gave me some calories. I also started with a children's instant breakfast oats formula. I could also tolerate starbucks thickshakes and while they are not good for us, they are a way to start food by mouth. Mary's brew sounds great.

    You will have to be very patient as his lack of appetite and pain and possible depressive state all make it very hard at times. Just know this phase will pass and he will eat again. Maybe not all the same foods as before (hopefully only healthy foods) but he will get back to a reasonable condition.

    All the best
    Scam

    Buzz
    Shakes worked well for me at first! I added canned peaches & pear's & eventually bananas. I would add Whey protien also. I was so intent of getting off my tube & tried anything. Cream of wheat was the easiest at first. My tastebud's did not work untill after four month's & then it got easier. Flat gingerale was ok also. I pushed myself too early & would get easily discouraged. It takes time & when it happened it was like a switch that turned backb on. I realised that my body was not ready.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
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    Hi Karen

    I had a real problem with drinking water while in treatment and for a while after, in fact the only water I was able to handle was Dasani, don’t ask me why but it was the only water that did not have a bad taste even though I could not taste anything.

    Take care
    Hondo
  • buzz99
    buzz99 Member Posts: 404
    #11
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    DrMary said:

    A few suggestions
    We had the "bad tasting water" issue also - does that include bottled water? Doug was finding tap water bad-tasting, possibly because of the chlorine or the metallic taste from the tap. He did OK with bottled water and with water from our Brita filter pitcher. Club soda might also taste better to him than flat water (Doug also found that it helped clear mucus better).

    I've given this recipe before, for our basic milkshake - in the beginning, it was the only thing that didn't sting or have funny tastes: 1/2 cup CarboGain (maltodextrin powder), 1 scoop of BlueBonnet Whey Isolate - original flavor, 1 spoon of L-glutamine powder, 1 cup of milk, 2-3 tablespoons Torani vanilla syrup in a good blender. If you use 2% milk, that's about 500 calories and tons of protein (over 20 g, I think - too lazy to go check). If fat is not a problem and you are trying to get more calories in, add heavy cream - each tablespoon is 50 calories (in the beginning, I made these with 4 T cream).

    Watch out for stevia - I found it in a lot of whey powders as a sweetener. It gave us both sore mouths and throats. Obviously, you want to avoid artificial sweeteners also - he needs the calories and you don't want to risk reactions.

    If he can stand 3-4 Boost Plus per day, he is getting enough vitamins and minerals, so your only problem is to get the calories in.

    BTW, don't forget fiber - it's in a lot of the PEG mixtures, so if you are weaning him off Jevity or similar, you might want to get more fiber going in by mouth. You can throw Benefiber (or similar) in the milkshake if he won't do water.

    We found it helpful to have a plan - X number of boosts, Y milkshakes and Z oz. of water by mouth today, and then increase one of the numbers each day. He could see that he was going to be at full calories in 2 weeks and didn't have to try to do it all at once; each day, he just had to be able to do what he did the day before plus a small increase. That helped keep it from being overwhelming.

    It's still work. . . they should give out medals for this.

    Milkshake recipe
    Buzz actually liked the milkshake and drank the whole thing!! I calculated the calories at 518 with 34 grams for protein. We came up short on tube feedings yesterday after a lengthy visit at the doctors office so the shake got us caught up. Now I have hope Buzz will get rid of the feeding tube, in time.
  • hawk711
    hawk711 Member Posts: 566
    #12
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    buzz99 said:

    Milkshake recipe
    Buzz actually liked the milkshake and drank the whole thing!! I calculated the calories at 518 with 34 grams for protein. We came up short on tube feedings yesterday after a lengthy visit at the doctors office so the shake got us caught up. Now I have hope Buzz will get rid of the feeding tube, in time.

    I found a good source of calories
    Hi Mrs Buzz and Buzz
    I still have a PEG and have used it now for 10 months. Almost pulled it this week, but decided to keep it a while longer. It helps me hold my weight and since I travel for work, it makes it easy to get energy as I can't eat much yet, soft foods like the others mentioned.
    I did find Scandi Shakes on line and each one is 600 calories, so worst case is I drink 3-4 a day if I have to. they have Chocolate, Vanilla and Strawberry and all taste great I must say. I love the Vanilla and Strawberry the best. But I'm not a big chocolate fan like most of the ladies out there. But I support Scandi Shakes 100%. You can order on line or from your local walgreens if you only want a few to try.
    I hope the eating comes back faster than mine. I can't wait to eat a big meal again, but for now I am happy to eat small portions and am trying to wait patiently for the light to turn back on so I can eat big again.
    All the best and good luck to you both,
    Steve
  • Army_Guy
    Army_Guy Member Posts: 53
    #13
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    Nutrition
    I weaned from my PEG in September. I started with really bland foods like a scrambled egg or baked potato and lots of water (if water tastes bad try plain club soda). Anything tart or spicy really bothered my tongue and mouth and even now some spicy food gives me grief. As a supplement I used (and still do) Vanilla Ensure Plus; Vanilla is the only sweet flavor I can taste. After a little over 4 months I eat almost everything except sweets (they still taste awful); some things still taste a little "off" but nothing tastes lousy anymore. But I'm at the weight I want to be and have been maintaining it for about 3 weeks now.

    Army
  • deb e19
    deb e19 Member Posts: 15
    #14
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    hawk711 said:

    I found a good source of calories
    Hi Mrs Buzz and Buzz
    I still have a PEG and have used it now for 10 months. Almost pulled it this week, but decided to keep it a while longer. It helps me hold my weight and since I travel for work, it makes it easy to get energy as I can't eat much yet, soft foods like the others mentioned.
    I did find Scandi Shakes on line and each one is 600 calories, so worst case is I drink 3-4 a day if I have to. they have Chocolate, Vanilla and Strawberry and all taste great I must say. I love the Vanilla and Strawberry the best. But I'm not a big chocolate fan like most of the ladies out there. But I support Scandi Shakes 100%. You can order on line or from your local walgreens if you only want a few to try.
    I hope the eating comes back faster than mine. I can't wait to eat a big meal again, but for now I am happy to eat small portions and am trying to wait patiently for the light to turn back on so I can eat big again.
    All the best and good luck to you both,
    Steve

    Being on a feeding tube
    Thanks for your reply. I am new to writing on this forum. I have had my PEG since May 2010 and feel like I will never get off of it. I live mostly on liquids with help from calorie boosters. I am having a hard time with solids. There are very few I can eat and the quantity is low. Food begins to stop at the back of my mouth and won't go down. Swallowing is fine just getting the food to that point.

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