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#161844 02-19-2013 02:54 PM
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I promised DonFoo that I would start a thread on putting real food down your feeding tube instead of the canned formula.
He calls it DIY. Most dieticians call it Blenderized Diet - BD
or Blenderized Tube Feed - BTF. I've researched it extensively and the forums helped so much in switching to a button instead of the dangling tube.
Basically it's common sense: the adjunctive forum and even the general forum always has questions about the latest greatest Anti cancer Diet and magical exotic foods. No body doubts that good nutriton is essential. Which is why I find it personally ironic that all the pegsters and pegophiles tout the nutrition aspect of downing 6 to 8 cans of high fructose corn syrup.
So far at least six dieticians have all assured me it's as good as real food, why because that's what they have told or taught.

NASA tried to have the astronauts use the canned forumulas but they all revolted and refused. The cans are perfect for space travel yet not one space station or one space faring nation uses them after trying them out. You can read the details on Wiki under Space Age Food.

What has happened is that a large group of concerned mothers whose children are entirely feeding tube dependent noticed that after a few years, their children did not thrive on the formula
Once they switched to BD or BTF, their kids perked up, put on weight, quit vomiting and improved in every way.

I'll do other links and info but have to go help Bev chop up real food for our dinner tonight. She will set out two plates as always, one for me and her, and I will smell mine, then dump it into the Vitamix, so I can put it down my tube. It's the best meal of the day.
But I'll leave behind a little history from a webpage of a guy I really liked but he died of cancer
[quote]Fairly quickly, these broken-down, synthesized formulas for enteral feeding became the norm; for a short while at least. It was quite an exciting time for the pioneers, who even went so far as to experiment with feeding patients into the jejunem during surgery. In 1949 polyethylene tubing was first used, and the first enteral feeding pump was developed. But problems of patient tolerance of these broken-down feeds seemed to be commonly arising. In an effort to address this, a sort of return to first principles took place: Hospital kitchens were asked to mimic a normal diet by finely pureeing and liquefying a blend of regular cooked foods, and naturally enough they were generally well-tolerated. The down sides in the hospital environments then though were cost � it was labour-intensive to prepare such foods, and (perhaps ironically) a hospital environment proved a difficult place to keep such foods free of contamination, as compared to sterile synthesized formulas.

In the 1960s, advances in the understanding of the role of amino acids led to further studies designed to see if new formulas could be devised to support patients without the side-effects those early attempts produced. This was supported hugely by the space program, with NASA getting very excited. They could see the great potential in an astronaut 'food' that was concentrated and gave a low fecal residue. These 'elemental diets' had many advantages for the nascent space flight program, in that they stored and transported well, had a very high nutrient density (so were very light), were very soluble so reconstituted easily, maintained an adequate nitrogen balance, and were easily tweaked and adjusted to meet an individual's specific metabolic needs better. But this stuff tasted so bad that the astronauts just refused to eat it. Even today, astronauts eat a largely natural diet, to the extent of taking fresh fruit and tasty baked brownies up with them. Tortillas make awesome edible, low-crumbing zero-gravity frisbees also.

Of course, patients taking their nutrition via tube do not really have a problem with how the solution tastes, and as more and more advances were made in materials for tubes, tube placement surgery and feeding formulas, the formulas derived from the NASA-led research became the standard go-to for tube feeding nutrition. But there was also a sort of medical research arms-race going on, with rapid advances in Parenteral Nutrition. For a while TPN (Total Parenteral Nutrition) was the one attracting all the attention, but quietly research continued in the roles of amino acids and other food constituents, in understanding digestion, absorption and gut physiology. Advances in the development of enteral feeding formulations, tube technology, and the demonstrated lower incidence of complications, lower cost and ease of access eventually moved enteral feeding to the forefront, where it remains the first choice option today.


Something else was going on in the 60's and 70's that related to tube feeding also � far fewer people were dying. Partly this was the result of a slow cultural change that had been gathering pace over the century � we seemed to become a lot less comfortable with allowing death to happen if it was at all avoidable, regardless of circumstances, in much of Western civilization � but a very large factor was technological. The miracles of antibiotics, amazing new drugs, advanced diagnostic and surgical techniques all combined to allow us to save lives that we never before would have been able to save. Serious accidents and injuries that once killed routinely no longer do. Life-limiting illnesses are still on the rise but with advances in treatment and diagnostics patients are tending to live longer. This modern phenomenon is especially pronounced at either end of the age spectrum, with the very young � the very prematurely born even � and the much older citizen.

Of course, saving all these lives means many more people living with serious impairments, a very common such impairment being the inability to eat. Since the last few decades of the 20th century, we've seen an explosion in the number of feeding tubes placed right across the world, most pronounced in countries like the USA. Actual numbers are hard to come by. According to an article published in 2005, there were around 344,000 people using a feeding tube at home in the USA, and the article quoted a 1995 study suggesting that 120,000 patients in long-term care were using feeding tubes also. One thing we do know is that tube placements have continued to grow faster than the population, so it would be reasonable to think there might be half a million to a million people using feeding tubes in the USA alone right now.

To go along with the boom in numbers of tube-fed patients, we now have commercially available enteral formulas in hundreds of different variations; many are very similar, just made by different manufacturers and to different calorie densities, but there are others designed with specific diseases and patient needs in mind. Most recently though, there has been an increasing uptake, driven in the main by parents and carers of tube-fed children and by adult patients themselves, in returning to a more natural food-based diet, often referred to as a blenderized, blended, or pureed-for-gastrostomy diet. It's almost as if we are somehow coming full circle.
[/quote]
history of enteral feeding


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I don't use the tube anymore or the canned nutrition, even though I have a few cases left, but like the talk of real food, and may get my "see food diet" back on tract. Most of my life, since I was 15, I was health conscious, and quite strong at 5'10, 275 at one point, that I built up too on purpose though fitness activities, and diet. I remember one friend in the 80's obtained some enteral nutrition cans from a hospital, which may have been only available by prescription then, and it tasted terrible. I just stuck with the regular whey protein.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #161859 02-20-2013 07:15 AM
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It's day 5 of no Jevity, but real food for breakfast and lunch.
It may just be the panacea effect, but I do feel much better.
I've been too nauseous to even go the gym, but will try a yoga class in about an hour.
If you have an IPAD or Iphone, EricS turned me onto a really great FREE app : Calorie Counter by FatSecret.
You just type in the food eg apple, banana, whey powder, peanut butter, etc and it not only tells you the calories but then you can add that amount of food to a meal and save it
That way you know how many calories, protein, carbs, you are getting.
I messed up the registration somehow but it still works on my ancient IPAD one. It has features like a barcode scanner that require a camera which the IPAD one does not, but it works perfecty for what i need. It even keeps track of all of your meals, every day for you once you enter it and you can save meals.
Not knowing if I was getting enough nutrition and calories from tossing stuff in the Vitamix was one of my major concerns.
I have found however that any more than a half cup of frozen spinach makes the blend too thick to get through the strainer.
(I also strain so my tube does not clog)
More links later to articles
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Thanks for getting this started. It makes so much common sense to use alternatives to the canned stuff especially since you woke me up to the fact most are so high in sugars, just the stuff I try to avoid even now as in all the drinks to hydrate beyond plain water and lightly taste enhanced waters.

I like the idea it makes having my wife continue having a somewhat normal meal making experience, a life time of nurturing is hard to break. Having a great whiff or two at the seat also feels it offers the continuum from kitchen to table.

As long we are willing, able, and desiring to make DB it seems like a good solution. It does come with caveats for those not particularly anal about all the details; in particular, hygiene throughout the process and the very special attention to ensuring the liquid has been fully strained to ensure it flows and does not accumulate and start clogging issues. However, I leave this to those practitioners.

For those wanting to do this, my research does indicate the Vitamix remains the king and if you get a doctor's authorization Vitamix has a great special program for those medically using the product.

My own plan is to use DB drinks and meals as they are convenient and use my own custom blended mix designed with my son to carry the base line or the fill in supplement for the day based on how the daily usage pattern develops.

thanks again. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
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I like to do a cold cucumber & avocado soup in the Vitamix, real easy. I don't know how it is through the tube, but it can be thinned out with more broth.

1 or 2 cucumbers..chilled,peeled, seeded or use hothouse, no need to peel, seed.
1avacado...chilled, flesh removed
1 can chicken broth..chilled. I use low sodium or organic
1/4 cup sour cream..chilled
Salt, black pepper to taste
Little onion, garlic, cumin, paprika, optional

Just put I blender, blend.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #161990 02-24-2013 03:27 AM
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Here is a typical breakfast mix that goes easily down my tube
(I use a plunger syringe to bolus feed so it may need a little more water for gravity bags)/ It has the same calories as two cans of Jevity. 1.5
1 large banana
1 large carrot
8 fl oz of grape juice
1 large hard boiled egg
2 tsp of peanut butter
1 scoop of Whey powder
2 cups of water

Lunch is similar except I use an apple instead of banana and frozen spinach or peas.
Thanks to EricS cool little app, I can always see the calories and fat, carb and proteins.
Have no idea of how this would taste though.
Charm


Last edited by Charm2017; 02-24-2013 03:27 AM. Reason: added water

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2009
Posts: 701
Likes: 1
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Hello,Everyone,

I originally posted this on List of Easy Foods but I think it is appropriate here, too. I have been experimenting with recipes that are nutrient rich and tasty with a smooth consistency. My goal has been to offer alternative meal choices to my husband, Clark, that are palatable. I have a photo of the finished dish but I don't have a way to post it. Any suggestions? It seems that I need a weblink to get it on here, but I could be wrong.

I use a blender for the following soup but if you have a Vitamix, all the better. Before you use this soup in your PEG, or J tube, you may have to add water. The best part about this recipe is that it is so good to serve for anyone and everyone!

Hearty Vegilicious Puree

Too many vegetable soups have little or no protein. I developed this recipe with the goal of combining ingredients that would be an excellent source of protein, carbohydrate and fat all in one bowl. The result is a colorful, tasty, full-bodied puree perfect for dinner on a cold winter night. Include a loaf of crusty Italian bread and watch it disappear!

Large Yellow Squash
1/2 Red Pepper
1/3 Sweet Onion
Granny Smith Apple cored
Medium Zucchini
2 Large Carrots
3 Cups Chicken Broth
1 Can Great Northern Beans or Cannelini Beans
Salt and Pepper
Extra Virgin Olive Oil
Plain Greek Yogurt
Minced Fresh Parsley

Cut first six ingredients into chunks, place in medium pot with 2 cups chicken broth. Cook gently until carrots are soft. Cool. Puree in batches and return to pot. Drain and rinse beans, adding them to blender with remaining chicken broth and puree. Add pureed beans to pot and stir to combine. Add salt and pepper to taste. Reheat mixture til hot. Ladel into bowls, drizzle with olive oil. Add 2 teaspoons of greek yogurt and chopped parsley. Serves 4.

Enjoy-
Anita
_________________________
Anita (58)
CG to husband, Clark, 69,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Crock Pot Creamy Split Pea Soup with Smoked Ham Hocks

16 ounces (1bag) of dried green split peas
About 6-8 cups of chicken broth, water, or combo
1 chopped onion
2 chopped carrot
2 chopped celery
2 cloves of minced garlic
1/4t dried thyme
Salt pepper to taste
Dash of paprika
2 smoked ham hocks or use bacon..optional
1/4t curry powder optional
1/4t cumin optional
1/4 cup heavy cream, half and half or milk.

Put all Ingredients in a crock pot, except cream. Put on high for 10 hours or low for 6 hours. When finished, reseason, blend or pur�e soup, except of meat, but you can if you want. Add cream to smoothen, To make thinner soup, add more liquid. I don't measure ingredients often, so just go with your taste, desire or estimates.

I never calculated the nutrient value, but but it is good lol. Charm, that recipe is a master blaster muscle builder! Anita, I have to try your soup smile


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jul 2012
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Charm, can you put any food in your mouth? I never really did it, except wine, but just to sample the taste of the food, can you swish, and hate to say, spit it out, if swallowing is a problem?


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #161994 02-24-2013 03:29 PM
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Paul

Nothing by mouth. no water, no food. I was bound and determined to swallow so kept getting therapy and exercises for almost a year, including that electrical stimulation, VitalStim but after failing 4 MBS, my SLP said it just wasn't working due to having that second round of radiation hitting the surgery damage.

I did try early on to put food in just for the taste and then "spit it out'. Only problem was that it didn't come out. so I ended up with food particles stuck in the varicula and slowly coming out all day. Not good for the teeth.

This last round of TX made everyting worse. My mouth is constantly awash with sticky stringy mucous that gags me. Plus some of it seems to be reflux food which will be a dental problem. I've never been so miserable in the five years as with these side effects. They are what put me in the hospital two weeks ago. While I can finally vomit for the first time, it seems to be just one way as I still can't swallow. I'm waking up choking every hour or so at night this last week so that's not helping. I see my ENT this week, but not sure what can be done here except wait till it subsides as it has done before. Just taking forever
Thanks for asking.
Charm

Last edited by Charm2017; 02-24-2013 03:31 PM. Reason: added ENT visit

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2009
Posts: 701
Likes: 1
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Charm,

You may already be doing this but have you tried sleeping on a 45 degree incline? Clark has to have the head of the bed on a 45 otherwise he is choking and coughing all night. We bought one of those beds that has a dual controls. He can operate his side independently of mine. He never has his side flat On the few times he tried to sleep flat, neither of us got any sleep with his choking, etc.

I wish you well�
Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Posts: 3,267
Likes: 1
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I use a sleepmatic type bed too. Charm, I hope for the best. If knowledge, moxie, and determination factor in, you will recover your swallowing.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #162006 02-24-2013 11:07 PM
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So sorry to hear the difficulties, Charm. You'll get through it. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #162007 02-25-2013 02:56 AM
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thanks/ Maybe I need to use the nebulizer a little more often, I cut down to just once a day. The suction machine gets a real workout during the day. I do pretty good until about 3 am in bed and then have been moving down to a chair.
Good to know that for some us, it seems chronic.
But it has been like this before and got better, so I'm going to keep on trying
Thanks again
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Peanut Punch

8-10 ice cubes
2 Tbs peanut butter
1 cup milk
1 Tbs condensed milk
Dash nutmeg
Dash cinnamon
Can add granola, honey, sugar, banana if desired

Blend until incorporated


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #162183 02-28-2013 10:39 AM
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That almost sounds tasty! Can't wait until Vita-Mix shows up.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Thanks. it's a carribean recipe. Hold on with two hands, that machine is powerful lol.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Vichyssoise (chilled leek and potato soup) can also be served warm, hot.

4 Tbs butter
4 leeks, cleaned,thinly sliced, white partss only
1/2 onion chopped
2 potatoes cubed
2 cups chicken stock or broth
2 cups heavy cream, can use mix of milk, add sour crean or buttermilk.
salt and pepper
Chives

Melt butter, add leeks, sweat for 5 minutes, addd potatoes, and cook for a minute or two, add broth, cook low heat 35 minutes. then blend in blender, add cream. To make thin, add more broth.
salt, pepper to taste. Can top with chives.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #162378 03-05-2013 12:44 PM
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Hey. I know I am slow but it just sort of occurred what is the point of all these great recipes when all you do is liquify it and jam in in a PEG. Hardly any joy in the experience it seems. Maybe a bit torturous in that all these great smells waft around and no joy. I get it if you attempt to put some on the tongue but if them buds are shot then that seems an exercise with little joy too.

:-) don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #162379 03-05-2013 02:21 PM
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The topic of the post is "Real Food For Tubes." All the recipes are blenderized, and just contributing to the thread, and topic. Some, and believe Charm does too, eats with a significant other, so both can consume, the patient with the tube, and other person by mouth, so both, or whoever they choose, may have enjoyment, and some normalcy. In prior threads, I again believe Charm mentioned sitting down for dinner every night with his wife for dinner, and he put his in a blender. A dining experience is more than just tasting, and tasting is more than just eating.

It doesn't matter to me, I don't have to post any recipes if it offends anyone, it saves me time to do other things.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






donfoo #162380 03-05-2013 03:01 PM
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[quote=donfoo]Hey. I know I am slow but it just sort of occurred what is the point of all these great recipes when all you do is liquify it and jam in in a PEG. Hardly any joy in the experience it seems. Maybe a bit torturous in that all these great smells waft around and no joy. I get it if you attempt to put some on the tongue but if them buds are shot then that seems an exercise with little joy too. [/quote]
I suggest you take a look at the article our own Charm did for the Washington Post several years ago. He may not be able to taste or swallow, but he still thoroughly enjoys his meals with real food!


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Keep posting Paul. Kris can only swallow liquids. He also has some taste despite total glossectomy. He doesn't use his PEG.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
PaulB #162392 03-05-2013 11:45 PM
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[quote]It doesn't matter to me, I don't have to post any recipes if it offends anyone, it saves me time to do other things.[/quote]Geez, Paul, don't be thin skinned. Did you see the ;-) on my sig? That means in jest. Keep posting, I was just commenting on the potential extra work preparing meals when you can blender up ingredient in minutes rather than hour(s) preparing full meals from scratch. As pointed out, the major benefit is maintaining as much normalcy if one has a tradition of having "family" meals. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #162399 03-06-2013 07:17 AM
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No problem Donfoo. I can be curt, at times. Maybe from being in fight mode from cancer for so long, it can happen. Anyway, I have plenty recipes for non cooking foods, but I would hate to prepare anything bad tasting or boring. I guess I'm watching too much of the fooodtv network lol.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #162428 03-06-2013 12:31 PM
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[quote]I guess I'm watching too much of the fooodtv network lol.[/quote]I do wonder why so many of us get obsessed with these food shows -- seems like torture, we just drool and fantasize how yummy and wonderful the smells and textures and tastes are and our reality is cardboard and metal taste being choked down. something not right there :-) :-) :-)


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #162431 03-06-2013 12:47 PM
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I watched them throughout my treatment, even when I couldn't eat by mouth. My favorite in the hospital, after midnight was, "Three sheets." Zane Lamprey traveled the world in search of drinks, and got blasted lol.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Love The Food Network! I have dysphagia to the point where I am on a PEG tube for all nutrition and hydration ~ will be two years next week. I still enjoy the smells of food and no longer am bothered that I can't ingest by mouth. Certainly I hope that those going through cancer treatment who have tubes will need them as short-term tools only. One thing that cancer can teach us is just how adaptable we humans can be.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
ZendaT #162448 03-06-2013 05:57 PM
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Zenda,

Can you provide more detail about your dysphagia? When you were going through treatments two years ago, did you become more dependent on the PEG and lose your swallow or something like that?
Thanks, Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
ZendaT #162469 03-06-2013 09:30 PM
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I like Anthony Bourdain, Bizarre Foods, Original Iron Chef with the dubbed voices lol. Of course, old and new PBS shows are better with less BAM.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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I think the food networks are in cahoots with the diet plan gurus. They keep each other in business. JMO.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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I will find out this week after 3 three years if I will be able to eat. I was strong enough back in October 2012 and set to accept that I would never eat again until I had a reoccruance and had a massive neck disection and they fixed it to I could eat but by having the surgery my muscles are weakened again and I have to do a mini start over to get the muscles strong. I have been working with a physical therapyist along with a speech pathologist. So who knows. I am grateful for the receipies because if this doesn't work this time I have something to fall back on. My taste buds are doing flip flops for food right now.


10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
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Not my recipe, but one from a blog called, Runner's High, before running.

One beet, top cut off or less if not used too
4 celery stalks
One lemon, top cut off, preferably organic or less to suit your pucker

I use a juicer for more thin juice, no peeling.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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The Power Juice, a great energy booster.

6oz carrots
3oz cucumber
3oz bell pepper
2oz tomato
4oz spinach
1 celery stalk
1/2 clove garlic
1/2 lemon

I would just eyeball. Who wants to measure.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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laugh Today I went out and got me a Blendtec and tried the receipe for the Jevity 1.5. The Blendtec did a great job and it was great to add real food through my feeding tube. It was great to have food go in and not get a upset stomach. Thank you for posting the receipe.


Round 1 5/2007 - 35 Rad treatments and 6 chemo of cisplatin
TPN feeding for 5 months during treatment and after.
Tumor was on the right side of the tongue.

Round 2. Tumor on the lower back right jaw area. Surgery on 3/12/2010 to remove the tumor, rebuild the jaw and some work on the back tongue.
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