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An alternative for your feeding tube

pinedog
Posts: 3
Joined: Mar 2005

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.

Buschmann's picture
Buschmann
Posts: 8
Joined: Mar 2005

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.

tobagogirl
Posts: 11
Joined: Apr 2002

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.

DRMom
Posts: 1
Joined: Mar 2011

Email to me any recipes, natural you have. He has lost 9 pounds since his surgery. I think he needs real food, but not sure how to prepare it and do it right so he will thrive. Please help. Any assistance you can give is much appreciated.
Debbie email me at DebMorgan@live.com

Hondo's picture
Hondo
Posts: 6238
Joined: Apr 2009

Welcome to the Family here on CSN. Sorry to hear Dad has this stuff but sounds like he has a really good caregiver helping him. I did not use the PEG tube in my treatment so I don’t know much about them, but you will get a lot of help, just start a new post about your question and everyone using a PEG will have an answer.

Take care
Hondo

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

You can try to start a new post, because this is an old thread, and I haven't seen a lot of these people post in the last couple years. Also further down in this post are some suggestions and a website for Lucys Real Food. Looks like a very detailed site to help with learning to make regular food that can be put through a peg tube.

Here are links to that site and a thread we had on this site:

BEST WEIGHT GAINING SMOOTHIES. Ideas here can be put thru tube if run thru an emulsifier.

LUCY's REAL FOOD. Haven't tried this but it looks promising.  

Good luck.

Hondo's picture
Hondo
Posts: 6238
Joined: Apr 2009

Someday show me how you link, I work with computers but that is something I never have to do and just don’t know how.

All the best
Hondo

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

Learned from John. Will PM you.

pinedog
Posts: 3
Joined: Mar 2005

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's picture
jsabol
Posts: 1156
Joined: Dec 2003

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

souplady's picture
souplady
Posts: 10
Joined: May 2009

I would also love to know the complete recipie for the tube diet that you mentioned. my email is jwandpa@gmail.com thanks so much!

deblenz02
Posts: 1
Joined: Jan 2010

This post is quite old so I'm not sure you'll receive this message. My mother was just diagnosed with stage 3 throat cancer. A feeding tube is being inserted next week. If you are able..would you please share this recipe? I'm scared and worried for her and want to do what I can to keep her strength up. Thanks and I hope your health has continued to improve.

Deb

katember
Posts: 2
Joined: Jun 2010

Hey there pinedog-

I know this is a really old post, but I've been looking for a recipe like the one you describe. My husband is 4 weeks into his 7 weeks of chemo with concurrent radiation for tongue cancer and he is just starting to use his feeding tube. I am supplementing his Jevity with juicer and blender drinks, but would love to be replacing the Jevity with something like you describe.
Could you possibly email me the recipe with amounts? Any more info on the Green Formula you used would be appreciated too.

Thanks so much,
Hope you are doing well,
Kathi

Nikimercer
Posts: 1
Joined: Jan 2011

Hi, my name in Niki. I really need your recipe for the healthy alternative to ensure for my friend who is critically I'll and is currently being given something with far too much sodium, amongst many other issues. I will be heading to the store now and hope to hear back from you with the amounts, you are wonderful for sharing this information and I look forward to hearing from you soon.. Thank you so much.
Truly,
Niki Mercer
Geminiki1826@yahoo.com

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

You may want to post your own thread about this question since the thread is so old abd I've not seen that poster around. Or maybe private message them?? You can also do a search for feeding tube alternatives and see what comes up. Not sure about the sodium levels in Jevity and Scandishake I think it's called. Maybe google that and check it out.

Not sure if there are any in here that you can use. These are some weight gaining smoothies:

http://csn.cancer.org/node/208805

Good luck hun,

Sweet

laurena's picture
laurena
Posts: 16
Joined: Apr 2004

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 mhoekstra@dccnet.com I thank you in advance!!

Laurena

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

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 .

katember
Posts: 2
Joined: Jun 2010

Hey Victor-

Are you still handing out a dealership # for Relev? My husband is four weeks into his 7 weeks of chemo/radiation for tongue cancer and your mix sounds great. He has a feeding tube and is just starting to use it. I've been making lots of juices and smoothies for him in addition to the jevity he puts into his tube. Not crazy about the Jevity...I like your idea better.
Would appreciate any help/ advice you can offer.

Thanks,
Hope you are doing well,
Kathi (and Breezy)

winki
Posts: 2
Joined: May 2005

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 WKWINKLER@EARTHLINK.NET

jburten
Posts: 3
Joined: Jul 2005

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's picture
LucyVance
Posts: 22
Joined: Feb 2008

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
Posts: 1
Joined: Apr 2009

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. meitnert@comcast.net

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

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's picture
SASH
Posts: 297
Joined: Apr 2006

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's picture
luckyfl
Posts: 42
Joined: Apr 2009

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's picture
victor53
Posts: 97
Joined: Apr 2008

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's picture
luckyfl
Posts: 42
Joined: Apr 2009

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's picture
RoseEm
Posts: 32
Joined: Apr 2009

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.

newbride
Posts: 142
Joined: Jul 2009

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?

SASH's picture
SASH
Posts: 297
Joined: Apr 2006

Sorry newbride, but I hadn't looked at this post since I posted.

Here are the answers to your questions.

"How long has it been since your last treatment? He starts his 3rd of 5 rotations this week." - Answer: I finished radiation Dec 31, 1999 and Chemo in March of 2000. Then had to put back on some weight before surgery May 1, 2000. Got up to about 145 pounds so added about 10 pounds in 6 weeks prior to surgery. By that point it was easier to swallow as radiation was over for a while. So I was back on solid foods but had to be careful of things high in sodium because of the sores left in my mouth from chemo and radiation. I found the best thing for me at that point was graham crackers soaked in milk. I was going through 2 - 3 gallons of milk a week and would eat a box of graham crackers in 2 days at the most. I think I was keeping Keebler in business at that point.

How is you weight at this point? Have you gained everything back? What about swallowing? Answer: over the past 9 1/2 years I have put it back on, not that I wanted to put it all back, but I am at about 228. Docs want me about 210 or so, but it is much harder to lose the weight now even with eating normally, well as normal as person can after going through this.

Swallowing is ok, but at times food does get lodged in my throat so I have to go clean it out when necessary. I do this by sticking my fingers down my throat and pull the food out. Over time you will find different foods for your husband that he can easily swallow and tolerate as it does seem to get better.

mess17
Posts: 5
Joined: Sep 2009

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!

jackrabbit
Posts: 7
Joined: Aug 2009

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?

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

I thought I would share the recipe I have used to keep my husband’s weight stable during chemo/radiation. He started at 160 lbs., lost 5 lbs. after the first two weeks of treatment, then ended treatment three days ago at 160 lbs. We were told he would lose lots of weight, so I am pleased to say that doesn't have to happen. Oh yes, he also has 3 liters of water by tube every day.

He has stage 4a base of tongue squamous cell carcinoma. He had 35 radiation treatments while simultaneously having chemo over 7 weeks time--1 dose of cisplatin (that caused him to lose some of his hearing), then 5 weekly treatments of carboplatin and taxol.

He had a PEG placed before he started treatment, and although he has been able to swallow water, pills, and Throat Coat tea, he has had little food for the last 5 weeks. (Today he had maybe a 1/4 cup of cream of wheat. I was delighted!!!)

Feel free to contact me if you have any questions about specific ingredients. You can also visit his Caring Bridge blog at https://www.caringbridge.org/visit/kevindavidsmith
Karen

Recipe for the super-high calorie shake (Total calories 1310):
This is my feeding tube recipe. This shake makes two servings. I make it in the morning, and save half for an evening meal in the refrigerator. Allow it to sit at room temperature for a bit of time, so it is more comfortable going through the tube.

1 can high calorie liquid meal replacement (Nutren 1.5, could use Ensure)
(15 g/protein, 375 calories)
1 envelope Carnation Instant Breakfast powder
(5 g/protein, 130 calories)
2 scoops EAS 100% whey protein powder (found at Target)
(23 g/protein, 240 calories)
3/4 cup Organic Half-and-Half
(6 g/protein, 240 calories)
3/4 cup prune juice
(1.5 g/protein, 135 calories)
1 ripe banana (108 calories)
1 Tblsp. *Barlean's Total Omega 3/6/9 oil, pomegranate blueberry flavor
(70 calories)
2 capsules *New Chapter Probiotic Immunity (to help with digestion)
2 capsules *Branched Chain Amino Acid Complex (to protect muscle tissue)
1 tablet Centrum chewable multi-vitamin (crushed)
1 tablet Zinc (crushed)
2 tsp. Fiber powder (Benefiber) (to help with constipation)
(15 calories)

Blend until very smooth, so it can pass through a feeding tube.
(* Ingredients can be found at a health food store.)

When husband was able to handle the taste of a shake by mouth, I would use this same recipe as above (minus the 3/4 cup half-and-half which was too rich for him to drink), but also add:
1/4 cup Half-and-Half
(2 g/protein, 80 calories)
1/2 cup whole milk
(4 g/protein, 75 calories)
1/4 cup walnuts (they blend very smooth in a blender)
(4.5 g/protein, 196 calories)
1/4 cup organic whole milk yogurt
(2 g/protein, 37 calories)
2 heaping Tblsp. Flax seed, ground
(3 g/protein, 45 calories)
2 heaping Tblsp. Wheat germ
(4 g/protein, 55 calories)
3-4 kinds of fresh or frozen fruits (strawberries, blueberries, peaches, pears, raspberries, mango, cantaloupe)

Total 1558 calories (plus the calories from the fresh/frozen fruit)

2 weeks after chemo/radiation is completely over, we will add anti-oxidents back into his diet, and the shake will additionally include:
2 Tblsp. *Noni juice
2 Tblsp. *Acai juice
1 packet Emergen-C powder (vitamin C powder)
1 Tblsp. *Green Vibrance (powdered organic greens, grasses, concentrated superfood)

chinaberry25
Posts: 8
Joined: Apr 2009

My husband is on a feeding tube and he puts 2 eggs nuked in a microwave for about 20 seconds. This kills all the bacteria and they are still soupy. This has given him a lot of energy that he would never have had otherwise. You may even want to try powder eggs that they use for frosting.

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

I've got recipes posted at Lucys Real Food website. Hope they help! Lucy

lucysrealfood

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

Hello!

So glad to hear you're feeling better. We had a similar experience and started to feeding tube recipes, homemade enteral nutrition wesite to share what we found. I have shared basic techniques, suggested equipment and a few recipes. With the basic techniques you can eat almost all your favorite foods. It made a big difference to be able to at least smell foods that you loved while eating and to share the same meals with friends and family.

Please take a look at the website when you have a chance - I hope you find it useful. This is just something we do volunteer (no profit, ads or sponsorship) to help others in similar predicaments. We'll also post information you'd like to share with others.

lucysrealfood.com

Best wishes,
Lucy

yank_mtnmannh
Posts: 1
Joined: Jan 2010

I was diagnosed with esophageal cancer in early September 2009. A stent in the esophagus was recommended in order NOT to have to have a feeding tube. For some reason, the stent isn't working as usual. Anything that goes through the stent doesn't pass on to the stomach. The surgeon thinks that there isn't enough muscle movement because the stent is long and the tumor is as well. During chemo & radiation treatment nothing could stop the nausea so a stomach tube was put in place, but the nausea continued, so the stomach tube could no longer be used, and a "j" tube was put in. I am on a 24/7 feeding through the "j" tube. It leaks almost all the time & I've developed a yeast buildup for 5 weeks now that no one has been able to find anything to block the gastric juices from eroding the exterior skin around the opening. If anyone has any thoughts or tips, they would be appreciated.

I also still have problematic thick whitish mucos that has to be coughed up. That usually starts a vomiting attack. The Radiation oncologist said that that should be out of my system a month after finishing Radiation therapy--it's been 7 weeks now.

I am extremely interested in the recipe you developed to be able to use more natural nutrients for feeding. Thank you, and thanks for sharing your experience.

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

HI Yank-m

There are many threads and posts on alternative feeds regarding cooked foods. I was intolerant to the Nestle and other hospital/ doctor introduced products and found 'Vitashake' by Sunrider to work for me to put through the tube. (Google it). I still take one a day but now on my cereal. Best mixed with Rice or Soy milk as Dairy may be contributing to your heavy mucus problem.

For the mucus I was prescribed Fluimucil (Search earlier posts) which helps break up the mucus.

Not sure about your yeast infection issue but I did consult with a good Naturopath during my treatment (and still now 16 weeks out) and they may have answers to your problem.

Hang in there, you will get over these hurdles.

Regds
Scambuster

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I concur with scambuster: you WILL get past this AND you should review previous posts to gather information that allows you to compare and contrast your experience to that of others. There is MUCH information about the topics you bring up, most of it very good.

In the meantime ... you can help to alleviate the mucous buildup in a couple of ways. The first is to remain hydrated; avoid sports drinks and instead, if water is not sufficient, try seltzer water (OncoMan told me it is even better than water for some reason).

The second is to practice diligent oral hygiene, including switching from standard mouthcare products (mouthwash and toothpaste) to products designed specifically to combat dry mouth (and thus help with the mucous problem); these can be found over the counter in drugstores or via prescription.

Third, someone I regard highly in this board (a guy who calls himself SASH) has indicated that dairy products tend to assist in the cultivation of yeast infections and even mucous buildup; consider lightening up on the dairy products for a spell, with the agreement of your doctors and nutritionist, of course.

Fourth, ask your doctors for something called Miracle Wash or Magic Wash (it seems to have a different name depending on where you live). This concoction, consisting of lidocaine and a few other ingredients, can alleviate both the infection and associated pain for 'cold sores' if they develop as a result of the infection.

Welcome, yank. Best wishes to you and your family.

Take care,

Joe

RosieNurse
Posts: 2
Joined: Apr 2010

My sister was diagnosed with mouth cancer in Sept 09, had her PEG placed a few weeks later. The family all decided we did not want to use the commercial preparation as it is nothing but junk. There is very little help out there if you don't want to use commercial but we found a site and started playing around a lot on our own. She is very tiny to begin with and with all the problems she had she went down to 80 lbs. Her last rad was 12/22/09 and she did not have the 3rd and final chemo because we were all convinced it would have killed her at the time.
She has been doing her food her self for the last couple of months and has found quite a few things to get into the tube and is now up to 102 lbs. She is feeling well, which is a miracle because of how sick she was and how many bouts of C-Diff she went through.
People need to take charge of their own health.
If anyone is interested I will give you some ideas on what to do and where to find more info.

RosieNurse
Posts: 2
Joined: Apr 2010

Just wanted to say the site we found that was very helpful was Lucy's Real Food. I saw Lucy had a couple of posts earlier. This was very helpful when we were starting out but most especially when my sister had "protein deficient edema". She was carrying about 20 lbs of fluid from her waist to her toes and because it was not the regular type of edema they could not give her diuretics. As usual, we had to do the research ourselves and find out about this edema. I had never come across it in my nursing and wasn't familiar with it. To get rid of it we had to severely increase her protein intake. On Lucy's site we discovered how to "boil" chicken to grind it fine enough to put through a feeding tube. Making your own food for a tube is somewhat tricky, you don't want to clog the tube because they will not usually jump to unclog it for you and you could go 24 hrs or more without nutrition, which is very bad if you're already battling cancer. (Please don't let that discourage you because you are not getting adequate nutrition through the commercial preparations) PLEASE research healthy nutrition from some good alternative sites that will explain what you really need to get healthy.

Kent Cass's picture
Kent Cass
Posts: 1770
Joined: Nov 2009

To unclog the tube- Coca-Cola. Was advised by my handlers before my first feeding that such is the way to get the tube unclogged. And, yes, it did happen, once, and the Coke did unclog the tube.

As for "commercial feedings", Rosie, are you talking about the Jevity, or the Ensure/Boost? The Jevity formula did right by me- only nutrition I got for 7-weeks with the battle raging, starting at the end of week #1, and would urge caution towards casting doubts that way. The stuff worked for me. Yes, I lost some 17% of my body weight, but considering the terms of the battle we fight/fought, perhaps that is not so great a %.

That said, I also am an advocate for healthy foods, and the "alternative," being the "salad freak." But during treatment with a PEG- Jevity does rule the day. Did right by me.

kcass

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

Hi there - On the links and resources page of Lucy's you'll find some good information on unclogging tubes, various methods and equipment that is available. lucysrealfood.com

Hondo's picture
Hondo
Posts: 6238
Joined: Apr 2009

Thanks for the tips I am planning on getting a PEG tube and might just need this info someday.

Hondo

jcontant80
Posts: 1
Joined: Jun 2010

Could you email me the recipe? My 2 1/2 year old son is gonna get a G-tube placed in a couple of days. I would really appreciate it. My email address is jcontant80@aol.com

skydog
Posts: 1
Joined: Sep 2010

can someone please send me this recipe that Pinedog has, thank you very much.

clarkisafterdark@gmail.com

ikamalie
Posts: 2
Joined: Oct 2010

Aloha, Did anyone ever get the recipe for Pine Dog's mix. We'd like it too for my Dad who got a feeding tube two weeks ago, and is finding the Jevity lacking. Thank you so much, Ikamalie

My email is
ikamalie@gmail.com

ikamalie
Posts: 2
Joined: Oct 2010

My dad is down to 135 lbs. from 165, and he's had three chemo treatments and three radiation rounds in two years for parotid gland cancer. he's doing good though, and in good spirits and just elected to get a peg because its so hard to eat with mouth sores, and mainly the partial paralysis of his face which makes food get all glomped up and stuck and hard to chew. We have been given Jevity whihc is OK, but we worry about the high fructose corn syrup and also it upsets his stomach. He's having a hard time, fitting as much jevity as they say he should take, into his stomach, it comes back up the tube, and he's also still eating some by mouth for the exercise and taste. The eating and getting enough calories is so hard though, for all of us. Before the peg he said he felt all he did was sit at the table all day and try to struggle down his meals. The tube is still really new and challenging for all of us, but we're looking forward to trying some of Lucy's recipes and maybe Pine Dog's (he said that sounded good) if anyone has it. We're open to any more suggestions too, and think tube will help him overall. Lots of ups and downs huh in this cancer process. He's been in ER four times in last month and a half because this fourth round of chemo is really really tough on him. All the best to all of you and your families.

justatadmore's picture
justatadmore
Posts: 1
Joined: Oct 2010

My father was recently diagnosed with stage 4 throat cancer... had SX about six months or so ago and now this and he's going into his fourth week of chemo and radiation in a 7 week program. He had a feeding tube inserted at the onset and has been able to eat until this past week. Lost 6 lbs in less than a week. Must start on tube now. Will attempt to take in fluids orally still but dietitian is concerned. I read your comments about your recipe and please ask that you send me a copy at your earliest convenience. I am in NC and he is in IN. I am traveling home at the end of this month to help my folks out for a short stint and would love to spend my time there making him meals this way in addition to his canned diet. My email address is sheila.blake@hotmail.com .

Thank you sooooo very much in advance.

I'm a workaholic normally and make my own dog food supplements weekly for a pack of 4 Great Danes so this should be a snap for me! Thankfully I enjoy that sort of thing.

Thanks again for any help you can give.

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

Hi there - We found the canned food was toxic for my husband too and he lost 10 pounds in one week on the cans! So we had to switch to making our own food which was a blessing and kept his weight up all through combined chemo/radiation for cancer in the back of his tongue. As I developed recipes for his feeding tube, I posted them on a website online at lucysrealfood.com. I also posted some basic instructions so I'm hoping these might be helpful for other people facing the same issue. Take a look. The Oley Foundation website also has great information on feeding tube issues - on the links and resources page, I've included links to other useful information that you might find helpful.

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