Create a PEGless club profile?

Ladylacy said:

Peg Tube

I can honestly say that without my husband's PEG tube he wouldn't be here today.  He had radiation and chemo first and it was very tough on him.  His was laryngeal cancer, lst primary.  Radiation completely closed off the back of his throat and if he hadn't of had the PEG tube inserted before treatment started they wouldn't have been able to insert a PEG tube later on.  He had a speech therapist that came to the house 3x weekly to work with him on swallowing, but like us she didn't know the back of his throat was closed off from the radiation.  We didn't find out until they did a laryngectomy.

Now fast forward to when he was diagnosed with a second primary at the cervical of his esophagus.  This oncologist (not the same oncologist as his first treatment since he was now being treated at Emory Winship Cancer Center) said no feeding tube before treatment started but then he changed his mind when he kept looking at my husband and his weighed 6'4" -- 145 and decided to insert a PEG tube again.  The H&N specialist said he wanted a feeding tube inserted.  Once again radiation did its damage to his throat but thankfully the specialist was able to open it without any surgery or problems.  He has had a PEG tube since May of 2012 and will be on it until his time is over on his earth.  Esophagus is too narrow.  

I think a feeding tube depends on the person and his care team.  Everyone is different in how they respond to radiation and chemo and even surgery.  For all those that can do it without a feeding tube that is great but too many need the feeding tube.

Sharon

Sharon, 

how did they open back of throat, i have scar tissue build up that closes my throat right aftrr i swallow and nakes it hard to move food down.  Evdn very soft food. Would appreciate anything you could offer!

thAnks,

Rachel

Ladylacy said:

Peg Tube Guideline

Sorry but I don't agree with one.  A PEG tube should be between the patient and their doctors only, not some guideline that non-professionals put out.  Too many people rely exactly on what they read on these boards.  Some of the responses on this make it seem like you can get along without one and if you don't well you for a better word aren't trying.  You know the different H&N cancers have radiation in different places.

We were told going on that because my husband was so underweight he needed a PEG tube before treatment started for laryngeal cancer.  If we waited there could be major problems for inserting one and if he didn't need it, it could easily be removed.  You talk about infections, well I guess he was lucky because he never had a problem with infections.  He kept it very clean.  There are too many different types of H&N cancer to say one person shouldn't get a feeding tube.  The first time, we were very lucky to have it inserted before radiation started because the radiation completely closed off the back of his throat, which if he hadn't had it inserted at the beginning, they wouldn't have been able to insert a PEG tube. 

Second time around for cancer at the cervical of his esophagus (right below where he was treated the first time), they inserted the tube again before treatment due to his weight and previous problems with the radiation.  Yes he still has it after one year and will have it until the end due to the fact that his swallowing is very poor. 

My personal feelings is that this topic is better left to the patient and their doctors as to whether or not they need the tube.  Easy to insert and easy to remove.  And as long as you follow the directions they give you, you should be okay with one.  Yes they can get infected but so can a minor cut.

And for all those that got thru treatment without needing one, I think that is great.  There is nothing better that I would love to see is my husband eating again even if it was just mashed potatoes.  That is nothing better I would love to see is my husband not ever having to go thru what he has gone thru for the last 3 years and to know that he isn't terminal due to this beast.

Sharon

Man, I've spend days deciding should I weigh in on this one.  I've wrote three different responses but each time decided not to post.  But I think that Sharon's post, which I completely agree with, has spurred me on.  

I think that you were/are trying to be helpful but if you objectively read your posts and your document it has the feel/tone that PEG tubes are to be avoided or are dangerous or, not brave.  Facts are that there are incredibly few complications (as a percentage) that are directly related to this procedure (all surgery has risks) and a high pain threshold should not necessarily be a deciding consideration if a tube is or is not used.  Most people are by nature will do anything to avoid surgery.  I know I fought getting a G-Tube tooth and nail.  If I read these posts and the new document as it is written, I might have fought harder and the facts DO bear out that PEG's inserted late in treatement are harder on the patient than when instered as a prophalactic early on.

I think if you did a survey of the folks on this board, past and present, you would find that the overwhelming percentage had some kind of feeding assistance.  Not utilizing a tube is a really great idea, especially from a swallow perspective and I applaud those who are able, because of their constitution, favorable reaction to therapy or other intangibles are able to make it all the way through the journey without their use.  I have also read many posts from folks that have had tubes inserted and were able to never utilize them.  No harm, no foul.  But, the numbers clearly point out that this is not the norm or even possible for most forms of our disease.  One example would be disease that has an undiscovered primary and/or a disease that encompasses both sides of the neck require more radiation and therefore will probably produce more adverse effects late in treatment that, more often than most, will cause swallowing anything other than water almost impossible.  This is obviously just one example of a plethora of cases where a feeding appliance is warranted and necessary.

A lay document that discusses this subject cannot possibly not take on the bias/conclusions of the author and, from only my personal opinion, can confuse a patient at a very emotional point and cause conflict; which was exactly what you were trying to avoid.

So, it was a good idea that probably is impossible to accomplish.

Just my 2¢

Joe

donfoo said:

Thank you!

I've been wondering where you been hiding? LOL that is  LOL or I have learned to use these great icons. LOL :-)

Your comments are consistent with those who have the impression the "guide" was to somehow lead someone with cancer to make some sort of decision about yes/no/when of getting a PEG.

As stated that never was the intention but I surely acknoledge that may be how it came across. I am working on a new version that will be in line and consistent with the intended goal of the document which really is a wiki/faq sort of slant where many factors relating to PEG are briefly discussed. Each factor is independent and and at most may be some indicator if this factor has more significance in terms of how complex and how much impact this factor may have in the overall scheme of things. There is NO intent to rank, weight, sort, compute any sort of way to use these factors in the document to determine in any way some sort of yes/no/when a PEG would/should be used. I this sense it is really a mutated checklist or dictionary with PEG topics.

I hope that works better for most. I am going to start redrafting the overall framework and viewpoint of the entire document, still seeking comments on individiual PEG factors and will make a secondary sweep to cover the specific and detailed updates. If factors are missing, suggest them as new, suggest updated verbage as desired, and deleting or combining others, anything that makes sense to you.

I value and respect every idea so thank you for taking the time to offer up your ideas.

 

Don

I've also kept quiet on this issue.  Don, there is no doubt your intentions are good but Joe and Sharon have good points.  I was one of the hardheaded individuals who said no to a tube at first thinking I could swallow the whole way.  WRONG!  I ended up having to have one put in shortly after treatments started.  I was so rundown that I was admitted to the hospital for a week the day after the tube was put in.  You put your life in the hands of doctors to put you on the path to healing.  If he or she says you should get the tube before treatment, they are most likely using their knowledge of your condition to base their decision.  I wholeheartedly agree with Joe when he said about new people looking at your material and making judgements on their treatment.  It just shouldn't be done in my humble opinion.  Sorry.

wolfen said:

Hi Don

I just wanted to provide some info for your data collection.

I believe one of the factors in determining whether or not a PEG should be placed is the overall health of the patient. In my husband's case, being a diabetic and a heart patient, it appeared to be a given that a PEG would be required. In fact, on his first visit to the original onc, preparations were underway to place one even before we met with the radiation onc. At that time & being in shock, things seemed to be moving too fast & my hubby was adamant that he would not let that happen. After changing to MDA, the word surrounding PEG placement became "possibility". It did become "reality" again as his condition deteriorated. After losing 65 lbs. before treatments had gotten underway, the doc simply said "We're putting in a PEG". In his case, there's a possibility that he would have succumbed much sooner without it.

As for problems with a PEG, as I mentioned on another thread, it appears that he had a rare problem with repeated very heavy bleeding at the PEG site. This could be considered for points against a PEG, but apparently a rare occurrence as his surgeon & several other docs had never heard of this.

And last, but not least....I donated two cases of tube feed(which had been delivered right before he passed away) to the charity St. Vincent De Paul. They provide meals & assitance to the indigent & also have a free clinic. I also gave them 17 bottle of Insulin.

As for "personal", whatever path one chooses or is chosen for them by their medical team for treatment is "their path" to be trod alone assisted by love, understanding, & compassion from all of us here.

Luv,

Wolfen

Wolfen,

I'm really glad to see you around again.  I hope you are well and please don't be a stranger, you are missed.

Joe

Don, I did read your early drafts and you have obviously put a lot of effort into creating a document that you undoubtedly wrote with only the best of helpful intentions and desire to "give back" or "pay it forward" in some way. .  In another thread I responded to you with details regarding having witnessed the positive benefits my son received from using a PEG to keep his nutritional and hydration status optimised during treatment and you invited me to participate in formulating this guide.  I must respectfully decline because I do not think it is in the best interest of newly diagnosed patients to be influenced by a "guide" written by laymen on a forum.  It is my opinion (based on being a live-in caregiver from the beginning of my son's Rad/Cisplatin treatments until scans showed him to be NED after tx was completed) that he would have lost a lot of weight, become significantly weaker, and recovered slower without the benefit of using the PEG during the last two weeks of tx and subsequent several weeks after completion of tx.  However, that is my "opinion" and has no professional basis.  I have been following this thread and agree with others who do not think that a "Pegless Club" and "Guide" is a good thing to present to newcomers on this forum.  Patients who are newly diagnosed may see a "Guide" as some sort of official reccommendation for their decision-making process.  I am especially concerned that you, as a layman creator of this document, will naturally have a bias when editing its tone and content even though you may try very hard to stay neutral and objective.  I am also uncomfortable with the fact that you have had no personal experience with the use of a PEG yourself (nor have any of the "pegless club" forum members who are being solicited for input), yet you feel that you can create a "guide".  It is true that the Onc doctors have probably never had to use a PEG themselves either, but they see patients everyday who do and it is those doctors who must be the ones to provide the guidance for the newly diagnosed based on their upclose and personal professional experience and expertise.  This forum is a wonderful resource for the sharing of tips for dealing with side effects and for reaching out to each other for emotional support and encouragement.  With all due respect, I hope you will reconsider the advisability of a layman written "guide" and let the decision-making process about a PEG remain between the patient and their Oncology team.