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Create a PEGless club profile?

donfoo's picture
donfoo
Posts: 1314
Joined: Dec 2012

Not sure when to declare myself officially PEGless but I feel good enough and far enough along to step out there and say I won't be getting one. PEG is such an emotional topic and not many elect or will themselves through treatment without a PEG, but many would probably be interested in seeing a common profile for those who are able to go without.

During the next week or so, I have some time to coordinate a data collection exercise to draft a set of questions and record answers to identify certain trends or characteristics that may be reliable indicators for those who may be able to avoid a PEG.

Are there enough of us here to even make collecting sufficient data a meaningful exercise? Is there enough interest amonst the community to want to have this sort of information. At a minimum I can jot down my profile, I bet JG would be willing to throw his info together, how many others are active here and avoided the PEG?

 

Thanks

Don

wolfen's picture
wolfen
Posts: 1198
Joined: Apr 2009

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

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

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

wolfen's picture
wolfen
Posts: 1198
Joined: Apr 2009

I am not that easy to get rid of.  LOL

Doing okay here. It is lonely. As I mentined to Phrannie earlier, I have actually been taking care of "someone" for the last fifty years, so it is an odd and unwelcome feeling.

Glad to see you too and hope that you continue to heal. I know it is a slow and demanding process. This particular cancer and treatments are just so brutal.

My daughter's last scan showed a little shrinkage in her many lung mets. Will never be any surgery, but at least chemo and her will to survive keeps her going. I HATE CANCER, but then don't we all.

Luv,

Wolfen

P.S. Didn't mean to hijack your post, Don. 

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

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. Smile.  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. 

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Amen.

J.

donfoo's picture
donfoo
Posts: 1314
Joined: Dec 2012

Thanks for comments, many great point, and all valued by me. And I aree 100% with our conclusion. What I early on decided to do was rephrase the document - it will not be called a guide nor is that the intention, now or ever. I will review the entire document and scrub it from having that connotation in symantics, meaning and content. The document will have a clear introduction to clearly define what it is, it's target audience, and what one should expect to come away with once having a read of it. I can say at this point the word guide may be used but as a verb not a noun where the context is the reader is GUIDED to consult with his medical professionals and feel comfortable that the relevaent topics are reviewed and discussed and any/all peg related decisions are personal and based upon the facts unique toe their situation and the how their medical professionals are GUIDING them to recommendations that the patient is free to accept or reject.

With respect to the term layperson, unless we have medical certifcates stating our qualification in the medical field we are all lay people. So keeping things apples to apples, nothing any lay person says can carry more weight than another. I am fine with that and will state so in the draft and strive to keep the content fact rather than opinion based across the board. However, I would entertain including "opinion" of certified medical professionals but nothing that smells of opiunion from any other class of persons.

One place I surely put the effort off track right out of the gate was using the terms "pegless club", especially in the title as the comments flowing have made me aware that a broader more balanced approach serving as the foundation for the document would serve much better duty. You are correct that to have any chance of being an effective document, both peg and pegless viewpoints must be taken into consideration. Also, there should be no attempt to create any sense of class here as that just bifurcates the audience away from a well intentioned document. Having all parties, both peg and pegless, getting "equal time" when discussing all included topics and factors serve the document best in striving to see both sides of the coins and all the facets of each issue. Even then the chance of any point being labeled bias remain and the only thing I can say is every attempt will be made to review the document details for accurate wording, literal meaning and figurative intent. What else can one do to make any claim that an issue can be clearly written, no intentional or unintentional bias, allow both side their perspective, and stopping short of supporting either side of the arguement.

Thanks again for your input. If you feel there remains any substantial failure of rebuttal, I am willing to go around again and hopefully get closer to understanding. 

One thing all people should be aware of is I strongly feel to the core is we have a tremendous opportunity today help shape the development of a well written document discussing relevant PEG topics.  Far more benefit comes from the existance rather the absence of such a document.  And there is a high possibility that we can increase the awareness and knowledge of a cancer patient facing the possible need for a supplemental feeding system while taking the hot from the topic to boot.

I encourage you all to remain engaged and continue to offer your input on each new draft.

Regards,don

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