An alternative for your feeding tube

pinedog
pinedog Member Posts: 3
edited March 2014 in Head and Neck Cancer #1
While they may work well for most people, the Novartis products that were prescribed for me I found wanting. I have seen on other forums that many have concerns about the nutritional value of these canned feeds. For me they were almost toxic. I felt sick from them. They were my only source of nourishment so I had to find an alternative. I couldn't tolerate enough to give me the calories to keep from losing weight. Luckily my naturopath came up with a recipe made from real food that really worked. . . . a recipe that goes through the tube. You have to make it yourself with a juicer and a blender. It's a lot of work to prepare but it is amazing how much better I feel after switching. I am not posting the recipe here because I don't want people to think I'm selling anything. I'm not. Just know there is an alternative that is made up of fruits, vegetables, tofu, nut butter, oils and about 20 items in total that when sieved will run through the tube.

I am just over one month past four weeks of twice daily radiation treatments for stage three throat cancer. Didn't get the extreme sore throat but was glad to have the feeding tube as any food by mouth is impossible to eat. To me almost everything tastes like cardboard liberally seasoned with chalk. The only thing I can get down without the 'yuck' factor are shakes and smoothies. I sailed through the treatments but for three weeks afterwards I went from riding my bike to the hospital every day to hardly being able to get off the couch. With the canned stuff I couldn't tolerate enough to provide the calories needed to sustain my weight. I've lost 30 pounds. Since switching to the real food formula things have turned around and I am feeling much better. Yesterday I started an exercise program and am planning to be back at work in a month or so. I'm not saying my improvement is totally related to the food I am taking. The natural process of healing is also at work. But taking control of my situation has stabilized my weight and improved my mental and physical outlook.

I'd be interested to know if others have had similar experiences. I searched the web and found it almost impossible to locate an alternative to the cans of 'chemicals' the pharmaceutical companies offer for the feeding tube.
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Comments

  • Buschmann
    Buschmann Member Posts: 8
    Thanks for the encouragement. I've been threatened with a feeding tube if I lose 10 lbs (which are already gone), and my kneejerk reaction was oppositional. As radiation treatments continue and swallowing becomes more difficult, I'm thinking maybe it's not such a bad thing. I'd love to know more about your recipe for real food. I don't think anyone will revile your salesmanship if you post it.

    Congrats on your healing.
  • pinedog
    pinedog Member Posts: 3
    If you decide to get the tube, which I would strongly advise, then to use this recipe you need strong support to help prepare it. It's a lot of work but worth it. If after reading this you are still interested I can email the whole recipe.

    To do this you need a juicer and a blender. Through the juicer goes kale, broccoli, cauliflower, parsley, celery, carrot, spinach, beet, apple, grapes. In the blender goes tofu, almond butter, avocado, banana, pure fruit juice, prune juice, milk, protein powder, olive oil, herring fish oil, chicken broth, multi vitamins and what's called Green Formula. This is well mixed and seived to make enough to supply three feeds a day for three days. This provides 2000 calories a day of well balanced nutrition with lots of energy and protein. It takes an hour or so to prepare which I suppose is a lot less time than preparing nine separate meals.
  • jsabol
    jsabol Member Posts: 1,145
    pinedog said:

    If you decide to get the tube, which I would strongly advise, then to use this recipe you need strong support to help prepare it. It's a lot of work but worth it. If after reading this you are still interested I can email the whole recipe.

    To do this you need a juicer and a blender. Through the juicer goes kale, broccoli, cauliflower, parsley, celery, carrot, spinach, beet, apple, grapes. In the blender goes tofu, almond butter, avocado, banana, pure fruit juice, prune juice, milk, protein powder, olive oil, herring fish oil, chicken broth, multi vitamins and what's called Green Formula. This is well mixed and seived to make enough to supply three feeds a day for three days. This provides 2000 calories a day of well balanced nutrition with lots of energy and protein. It takes an hour or so to prepare which I suppose is a lot less time than preparing nine separate meals.

    Hi Pinedog,
    I am visiting at this site (my cancer was colon), gleaning info for a friend recently diagnosed with oral Ca, mets to neck node. He is having a tube "planted" tomorrow, in preparation for his raditation and chemo next week. His doc wouldn't consider going ahead without the tube in place. I will let him know about alternative food for the tube; sounds great and worth the extra work. (He's also a chemist, so it doesn't sound too daunting!)
    When I was having my chemo, I would read the ingredient list on ensure and the like, and worry about putting even more chemicals in my body; they didn't agree with me either. For a while, cooked pumpkin and squash were all I craved.
    Good luck to you with your continued healing. Judy
  • tobagogirl
    tobagogirl Member Posts: 11
    Buschmann said:

    Thanks for the encouragement. I've been threatened with a feeding tube if I lose 10 lbs (which are already gone), and my kneejerk reaction was oppositional. As radiation treatments continue and swallowing becomes more difficult, I'm thinking maybe it's not such a bad thing. I'd love to know more about your recipe for real food. I don't think anyone will revile your salesmanship if you post it.

    Congrats on your healing.

    Hi there. Please consider the g-tube. I have had one for the past 2 1/2 years and find it quite convenient. As a matter of fact I'm on my second tube. I had the original changed in November 2004. At first I only ingested Boost and Ensure. But now I cook my special "stoups", which are a combination of soup and stew. I put in all the fresh veggies I can find and season the pot as if I'm serving company. When it's finished, I blend it so that I can put it into my tube. For breakfast I cook cereal, either oats or cream of wheat or tapioca, using soy milk instead of regular cow's milk and flavour with vanilla. Yum!
    You will be amazed at how quickly you may become accustomed to the tube.
    One caution, ask all the questions about the tube. Ask how to keep it flushed and clean, and how to keep the area around the tube clean and healthy. And if your tube has a bubble attached, ask your physician how to know when to inflate it, if ever. Also ask how best to keep the tube under clothing. Currently my stoma is slightly inflamed, but that hasn't stopped me from tending to my garden a minimum of 6 hours a day.
    So, go for it.
    You will be in my prayers.
    Incidentally, I haven't been able to swallow for almost 3 years following sinus and submandibullar cancer and radiation. But I'm doing wonderfully, although I sometimes miss the textures of food. I still have my taste buds so I can taste without swallowing.
    Good luck to you.
  • laurena
    laurena Member Posts: 16
    Hey Pinedog I would be interested in your recipe!! I have a MicKey tube. On the outside it looks like a button. For feeding you attach two other tubes. I have lived 3 years on cans and cannot gain weight. The cans make me nauseaus very often. The tube needs to be replaced twice a year. Anybody with recipes bring them here! Or email me [email protected] I thank you in advance!!

    Laurena
  • winki
    winki Member Posts: 2
    MY Mom IS GOING THROUGH RADIATION AND HAVING THE SAME ISSUES. I WOULD LOVE TO KNOW YOUR RECEIPE. i WOULD BE GRATEFUL IF YOU WOULD E-MAIL IT TO ME AT [email protected]
  • jburten
    jburten Member Posts: 3
    I was wondering if you still have your feeding tube and, if not, how you are coping with eating. I in in recovery and have swallowing issues and am trying to find things to eat that are more natural than not.
  • LucyVance
    LucyVance Member Posts: 21
    Hi there - Great to hear people are looking for options. My fiance couldn't tolerate the canned nutrition at all and began losing 10 lbs a week. Starting at 165 and 5'11 - that couldn't last long. So I developed recipes that we could make and he starting gaining weight right away - and kept the weight on even during chemo and radiation. It can really make a difference. If you're interested the website is lucysrealfood.com. Its worth a try - I share what equipment, methods, etc. worked for me. Good luck! Would love to add more recipes so if you'd like me to add your recipes to the website, I'd be happy to and I'll credit them to you of course.
  • meitnert
    meitnert Member Posts: 1
    feeding tube
    I just joined this network, primarily to find out your recipe. I really need something healthier than jevity to feed to my mom. She is not gaining any weight, just as you had indicated. And the stuff is not really very good for her. So if you could please email it to me I would greatly appreciate it. [email protected]
  • luckyfl
    luckyfl Member Posts: 42
    Radiation sores/Feeding tube
    Hi, my name is Roxie and probally in a week if mysurgical site is cover with the new tissues iam ready to start my radiation for adenocarcinoma of my soft palate in low grade .my surgeon have a lot of confi that he removed all bad cells but, since the cancer was in the bone margin ,he want radiation so i can be safe,iam 47.
    My radiations will be 3 minutes daily 5x a week for 5 weeks, i know yours are more agressive than mine ,but, can you tell me about the peg tube ??? i definatelly don't want that ,,and i need to loose weight anyways i can afford to loose up to 40 pounds, do u think i can be so sore at the point that i will not be able to drink ensure or slim fast or nutrional homemade shake, iam so afraid of all what i read here ,,it is so scary all the testimonies.
    I will really apreciated.
    Roxie
  • SASH
    SASH Member Posts: 418 Member
    luckyfl said:

    Radiation sores/Feeding tube
    Hi, my name is Roxie and probally in a week if mysurgical site is cover with the new tissues iam ready to start my radiation for adenocarcinoma of my soft palate in low grade .my surgeon have a lot of confi that he removed all bad cells but, since the cancer was in the bone margin ,he want radiation so i can be safe,iam 47.
    My radiations will be 3 minutes daily 5x a week for 5 weeks, i know yours are more agressive than mine ,but, can you tell me about the peg tube ??? i definatelly don't want that ,,and i need to loose weight anyways i can afford to loose up to 40 pounds, do u think i can be so sore at the point that i will not be able to drink ensure or slim fast or nutrional homemade shake, iam so afraid of all what i read here ,,it is so scary all the testimonies.
    I will really apreciated.
    Roxie

    Weight Loss
    Everyone is different. I refused to have the peg tube during radiation and chemo for my stage 4 tongue cancer. The radiation caused lots of swelling and soreness while swallowing. I had a prescription for Magic Mix/Magic Mouthwash that numbed me so I was able to swallow for a while. I had weight to lose also, but lost much more than I should have. I went down from 230 to 135 because at points all I could manage to get down was a single glass of Gatorade a day.

    Talk to your doctors and have them advise you if you will be able to have the tube put in while in radiation treatment. They may say it is possible but might also say that you will have to postpone some treatments while the tube heals.

    They might suggest getting the tube and you might never need it but have it available just in case you need it.

    My suggestion is that if you do get the tube for treatment, swallow as much by mouth and just use the tube as a filler for additional nutrition and calories.
  • luckyfl
    luckyfl Member Posts: 42
    SASH said:

    Weight Loss
    Everyone is different. I refused to have the peg tube during radiation and chemo for my stage 4 tongue cancer. The radiation caused lots of swelling and soreness while swallowing. I had a prescription for Magic Mix/Magic Mouthwash that numbed me so I was able to swallow for a while. I had weight to lose also, but lost much more than I should have. I went down from 230 to 135 because at points all I could manage to get down was a single glass of Gatorade a day.

    Talk to your doctors and have them advise you if you will be able to have the tube put in while in radiation treatment. They may say it is possible but might also say that you will have to postpone some treatments while the tube heals.

    They might suggest getting the tube and you might never need it but have it available just in case you need it.

    My suggestion is that if you do get the tube for treatment, swallow as much by mouth and just use the tube as a filler for additional nutrition and calories.

    Great Advised Sash
    Thank You very much for the great advise ,iam agree to wait since my rad doc don't even mentioned to me ,i hear about that because his nurse mentined to me the first day a went to the office to do the mask ,and the just the idea of feeding tube it freeks me out silly because iam a nurse.
    As you said and someone else here told me too ,everyone is diferent and i hope i am one of those. I am 47 and as i posted in my first entry ,my tinny tumor was just that tinny but cancerouse ,not spreaded ,no pain no symtoms ,low grade adenocarcinoma of my minor salivary gland ,,it is scary tho no matter what !!.
    Well, i will wait to see what happen , iam ready for the soreness and the usual sideeffect ,i will takecare myself to avoid infections or complications, iam sure my doc will provide me all the confi meds and solutions to minimize the pain, i will try all i can to eat well as i tilerate even that i can afford to lose up to 50 pounds.
    Thanks Sash and g/l to you.
    I will not start maybe till the 13th so ill keep posted.
  • victor53
    victor53 Member Posts: 97
    luckyfl said:

    Great Advised Sash
    Thank You very much for the great advise ,iam agree to wait since my rad doc don't even mentioned to me ,i hear about that because his nurse mentined to me the first day a went to the office to do the mask ,and the just the idea of feeding tube it freeks me out silly because iam a nurse.
    As you said and someone else here told me too ,everyone is diferent and i hope i am one of those. I am 47 and as i posted in my first entry ,my tinny tumor was just that tinny but cancerouse ,not spreaded ,no pain no symtoms ,low grade adenocarcinoma of my minor salivary gland ,,it is scary tho no matter what !!.
    Well, i will wait to see what happen , iam ready for the soreness and the usual sideeffect ,i will takecare myself to avoid infections or complications, iam sure my doc will provide me all the confi meds and solutions to minimize the pain, i will try all i can to eat well as i tilerate even that i can afford to lose up to 50 pounds.
    Thanks Sash and g/l to you.
    I will not start maybe till the 13th so ill keep posted.

    its bad to think that you
    its bad to think that you have the wieght to lose because the wieght you lose by not eating is muscle and good stuff you dont want to lose. Keeping your wieght up will help you heal better and eventually give you the energy to burn the bad wieght off
  • luckyfl
    luckyfl Member Posts: 42
    victor53 said:

    its bad to think that you
    its bad to think that you have the wieght to lose because the wieght you lose by not eating is muscle and good stuff you dont want to lose. Keeping your wieght up will help you heal better and eventually give you the energy to burn the bad wieght off

    weigh
    NO,NO,NO,, iam not thinking that way,but iam very well build in the healthy way to look, i always been very concerning about good nutrition and ,what i mean is that my body is well prepare for a little trauma as radiation is,i will continue to treat my body good during and after treatment for sure no matter the cost or pain.
    Ty
  • RoseEm
    RoseEm Member Posts: 32
    luckyfl said:

    weigh
    NO,NO,NO,, iam not thinking that way,but iam very well build in the healthy way to look, i always been very concerning about good nutrition and ,what i mean is that my body is well prepare for a little trauma as radiation is,i will continue to treat my body good during and after treatment for sure no matter the cost or pain.
    Ty

    Nothing to fear
    I had nasopharyngeal cancer (a rare form of neck cancer) and I had a g-tube for a little over a year. I was intimidated, as were my caregivers, at first. I had no choice, my radiation was radical and I could, literally, not swallow anything - even water. There were times I had to go to the gastrointerolgist because of rare incidents when the site became inflamed, but the tube saved my life.

    You do need to keep trying to swallow. I had to have speech therapy before they would remove the tube because my epiglottis (sp?) and other muscles had atrophied. After about 3 months, the tube came out.

    My eating is not exactly what it was before the treatments, but I am a survivor, and have started to adjust to my "new normal" life.

    I, too, worry that anyone would think of a tube as a weight loss tool. It is VITALLY important that you get as much nutrition as you can and keep your weight as close to normal levels as possible. If not, I guarantee your doctor will not be happy.
  • souplady
    souplady Member Posts: 10
    pinedog said:

    If you decide to get the tube, which I would strongly advise, then to use this recipe you need strong support to help prepare it. It's a lot of work but worth it. If after reading this you are still interested I can email the whole recipe.

    To do this you need a juicer and a blender. Through the juicer goes kale, broccoli, cauliflower, parsley, celery, carrot, spinach, beet, apple, grapes. In the blender goes tofu, almond butter, avocado, banana, pure fruit juice, prune juice, milk, protein powder, olive oil, herring fish oil, chicken broth, multi vitamins and what's called Green Formula. This is well mixed and seived to make enough to supply three feeds a day for three days. This provides 2000 calories a day of well balanced nutrition with lots of energy and protein. It takes an hour or so to prepare which I suppose is a lot less time than preparing nine separate meals.

    liquid diet
    I would also love to know the complete recipie for the tube diet that you mentioned. my email is [email protected] thanks so much!
  • victor53
    victor53 Member Posts: 97
    laurena said:

    Hey Pinedog I would be interested in your recipe!! I have a MicKey tube. On the outside it looks like a button. For feeding you attach two other tubes. I have lived 3 years on cans and cannot gain weight. The cans make me nauseaus very often. The tube needs to be replaced twice a year. Anybody with recipes bring them here! Or email me [email protected] I thank you in advance!!

    Laurena

    my mix
    i mix 1 and 1/2 scoops Whey protien powder from GNC
    with a tablespoon of L Glutamine
    plus a scoop of Simplicity it a meal replacement powder from a company called Reliv
    plus a scoop of Reliv Now its their vitamin powder.
    plus a scoop of Supreme Foods its a vegetable and fruit powder i get at GNC
    plus a couple of tablespoons of Flax Seed oil
    plus table spoon of freeze dried black razzberries i get from Stokes berry farms in Ohio.
    I put it all in one of the big shakers from GNC
    i mixed with water up to the top like 25 ounces i think to the top of one of those gnc shakers.
    shake it good and it pours down my tube.
    I am getting my tube out this week just got my first scan back clean ,5 months post treatment,so i will have to start drinking it.
    I feel great with lots of energy.
    I was doing 3 shakes a day now i am eating more cheese omelets and mashed potatoes and soups so i am only doing 1 or 2 a day.
    When i say scoops i mean the scoops that come in the cans.
    The Reliv stuff i thought was a multi level marketing scam but i got turned on to it 5 years ago when i was going on a diet and it worked for me and i felt great.
    I got a dealer ship number from my mom so its 40% off if you want to try it ,i will give you or anybody else the dealership number.
    She doesnt make a dime off it she just lets people use her number.
    This is my own mix of stuff from articles ive read about black rassberries and L glutamine and flax seed oil and personal experience with the Reliv stuff,and the protien and supreme foods just made sence to me.
    I take some fish oil and probiotics too. I actually like my feeding tube i feel great and would leave it in for a bit longer but summers here and im a surfer and a swimmer and dont feel like tapeing it up .
  • newbride
    newbride Member Posts: 142
    SASH said:

    Weight Loss
    Everyone is different. I refused to have the peg tube during radiation and chemo for my stage 4 tongue cancer. The radiation caused lots of swelling and soreness while swallowing. I had a prescription for Magic Mix/Magic Mouthwash that numbed me so I was able to swallow for a while. I had weight to lose also, but lost much more than I should have. I went down from 230 to 135 because at points all I could manage to get down was a single glass of Gatorade a day.

    Talk to your doctors and have them advise you if you will be able to have the tube put in while in radiation treatment. They may say it is possible but might also say that you will have to postpone some treatments while the tube heals.

    They might suggest getting the tube and you might never need it but have it available just in case you need it.

    My suggestion is that if you do get the tube for treatment, swallow as much by mouth and just use the tube as a filler for additional nutrition and calories.

    Sash - Question
    Sash I can't believe how similar it sounds like your experience and my husbands have been. He just got the PEG tube this week - which was a nightmare - because of his prior surgery they could not put him totally out and he felt alot of pain.

    He was about 220 before treatments started he is now down to 173 (although when we admit him today I might learn he is lower). He also is taking hardly anything by mouth - maybe a glass of gaterade a day if that. He has the magic mouthwash also.

    How long has it been since your last treatment? He starts his 3rd of 5 rotations this week.

    How is you weight at this point? Have you gained everything back? What about swallowing?
  • jackrabbit
    jackrabbit Member Posts: 7
    Feeding tube recipe please!
    I know this is quite an old thread, so I don't know if I'll get a reply, but I'm on a feeding tube right now and am desperatly wanting something healthier to put down it than Ensure. Please send me your recipe, it sound great. I don't like posting my email address on message boards, can you just post the recipe here?
  • mess17
    mess17 Member Posts: 5
    luckyfl said:

    Radiation sores/Feeding tube
    Hi, my name is Roxie and probally in a week if mysurgical site is cover with the new tissues iam ready to start my radiation for adenocarcinoma of my soft palate in low grade .my surgeon have a lot of confi that he removed all bad cells but, since the cancer was in the bone margin ,he want radiation so i can be safe,iam 47.
    My radiations will be 3 minutes daily 5x a week for 5 weeks, i know yours are more agressive than mine ,but, can you tell me about the peg tube ??? i definatelly don't want that ,,and i need to loose weight anyways i can afford to loose up to 40 pounds, do u think i can be so sore at the point that i will not be able to drink ensure or slim fast or nutrional homemade shake, iam so afraid of all what i read here ,,it is so scary all the testimonies.
    I will really apreciated.
    Roxie

    Feeding Tube
    Hello! I know your post was awhile ago but I just wanted to say I hope you got the tube. It is imperative that you keep building muscle, not fat, by getting protein and nutrients. The tendency is for people to gain weight by eating high calorie sweets but that is not building muscles.

    Some high cal options are Carnation VHC Instant Breakfast - 560 calories per 8oz. Mix with some ice cream and that bumps up to 775 cals, and it tastes good. Also, Benecalorie is a flavorless 350 cal liquid that you can use whereever you use water (oatmeal, mashed potatoes). Also Boost makes a Peach Juice drink that when mixed with sprite makes a nice spritzer.

    Hope you are doing well!