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Joined: Sep 2006
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"OCF Canuck"
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"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,338
After 17 years and 2 cancer surgeries I was rediagnosed and had removal surgery Jan 5

My swallowing apparatus will never be functional

I will be permitted to wet my mouth to remove all that gunk but that’s it for mouth involvement in my life.

All eating and drinking will be by Pegg. The hospital here is very hard line about what is put in the peg tube, how it is administered and correct liquidity.

This has been a hell of a ride. I ended up in icu for a few days because treach malfunctioned - code blue - corrected but no one is in love with corrections.

Surgeon has PROMISES ME IT WILL BE GONE IN A WEEK

HELP HELP AND HELP. EQUIPMENT, food ideas/ preparation, equipment needed, etc etc

Still very cold in Canada but fear seems unending

Good to talk to you Brian

Donna Butcher. - Pandora 99


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
Joined: Oct 2012
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Pandora, there’s a reason oncologists are very strict about what you put in your peg tube and why you can only wet your lips with water but not even take a sip. My husband’s esophagus was totally closed by scarring after radiation. He took his nutrition through a peg for half a year before a radiation interventionist at Toronto General Hospital opened it up for him. Initially, John was able to swallow liquids and puréed food but then he developed silent aspiration which put him in hospital for more than twenty days. Then two months later, the pneumonia happened again and that time it proved to be fatal.

When John was diagnosed as having the blockage in his esophagus, I had a discussion with his oncologist who was dead set against me putting puréed food into the peg tube because he said it would cause blockage and the stomach couldn’t taste food anyway. I am from Ontario, if you ask, you should be able to have a dietitian to guide you and help you with how much should go into the peg tube. Sometimes it is important to know how much water to put in so that the kidneys are not over-burdened. I was actually told that i was giving John too much water.

Whatever help you need, ask the doctors. The system right now is burdened because of the covid situation but back when John was in treatment I got whatever I needed (for example, he needed an appointment with an SLP and I gave the oncology nurse the name and number of the SLP he had seen previously and that got him in fairly quickly, without having to wait for six months).

Wishing you the best!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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OCF Founder
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I think that gmcraft makes some good points. Clearly we all agree that doctors with more knowledge and particularly intimate understanding of any particular patient are the people you have to trust. We as travelers on this journey have experiences to draw from, but they are never the equal to their years of school and clinical experience. We are not a substitute for them. But I have seen many examples over 22 years of doing this, that have taught me they are fallible human beings like all of us, and are not all knowing, and even sometimes make mistakes. Even with that knowledge people have to have their bottom line, go to person, that they trust and who is qualified to not only treat them, but answer a myriad of questions, many outside their area of expertise and training. The question is should we be asking a specialist in chemo therapy for answers about something related to eating?

For instance, I trust my radiation oncologist to determine in his area of experience, training, and expertise to use the tool he is trained in to kill my cancer. I’m less interested in what he thinks about surgery which is a world of details and a depth of anatomical knowledge he will never have. Ditto what he thinks about nutrition, also out of his realm. When it comes to PEG tubes I trust my Gastroentorolgy doctor, but even he is not a nutritionist. It’s a very specialized world to be in medicine. Knowing that, we trust teams over singular doctors.

The topic of blended diets crosses two different disciplines gastro and nutrition. Each with a perspective of a topic that has evolved and changed greatly just in the last decade. The Oley Foundation who has more information about tube feedings and nutrition is a good source. I read about my button type Mik-key PEG tube system there and I knew immediately I wanted rid of my dangling tube that was in the way, prone to clogging and had no good way to unclog it at home, causing emergency trips to the hospital to have it taken out and replaced, and in general as something not being balloon retained, that I could not change ever at home. Only my GI doctor understood my desire to change and why, the rest of the team was clueless that the button type even existed let alone its advantages.

When it came to nutrition, my original nutritionist was only interested in keeping me on pharma company formulas. God forbid that I should eat the real food that has sustained me and most of humanity forever. Brainwashed comes to mind as I think of that. Obviously to her, those canned products must be better in someway.

There are reasons for some people, in some situations, that formulas are better. But tens of thousands of people on PEG tubes blend their own foods when they return to a normal life, but are NPO or nothing by mouth for various reasons. There is no reason that with a little education people cannot do this if they do not have contradictory medical issues. It’s healthier and cheaper. Even if they just blend up what’re the rest of the family is eating most of the time, they are frequently better off. They are no more prone to nutrition or digestion issues than anyone else. Most of America lives on junk food. It’s bad for you on so many levels. My cardiologist could not be happier with my cardiovascular health since I started eating the things I do on a real food, PEG diet. Every part of my blood health is at optimal levels. Even my blood pressure went down to normal over time as the fats and other things I was consuming no longer clogged my arteries. I’m actually healthier this way. All that aside I would kill today to eat some great tasting well cooked meals; even a hamburger commercial reminds me of what I have lost. Food is one if life’s great pleasures. I’ve come to accept its absence. But if I have to do things through a tube I’m going to optimize it. That ability to add a variety of healthy natural foods is not happening on canned formulas. Just read their labels.

Just remember that doing this well is very dependent on getting set up right. The right blender, the right diameter PEG tube and design, the right consistency of blend for bolus syringe feeding. None of this is rocket science but you have to learn it like anything else.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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