Understanding PEG document draft posted

Thank you for your time to reply. I do really appreciate your thoughts as it offers me a chance to reflect on what I held as a core belief around some of this stuff. That is medical in nature as I have never been sick day in my life until BOT cancer came along.

Clearly, there are many facets to this issue and it goes without saying the topic is a controversial topic, even amongst professionals working in this field day in and day out. You can take a dozen doctors and you will find them each with their own opinions about PEG, even as simple as some having more less a predetermined position on them - get one early or wait until yuou need one. Nothing personalized about such a recommendation yet here are professionals who take such positions each and every day.

It goes without saying anything and all I wrote and understand about the subject has as much medical science behind it as ant poop. LOL I am certain I never convyed I was authoritative on this subject, nor had any medical background and that is fact. Again, given the authorative ones can argue PEG all day long, there is nothing that can be authored definatively by anyone here about PEG.

Maybe that is where I made a miscalcualation when what I felt a bit of ambition and good might make a topic a bit clearer than before. Maybe move to a point of clarity just a bit more in focus, maybe bring out the topics of controversy in a bit more rational and objective manner, maybe stating or framing the arguement at least. On this point I concede the goal was far too ambitious and maybe a testament to why PEG is and maybe always will remain such an emotional subject.

It appears that moving this forward even an inch is not likely to happen unless someone undertakes a serious effort and a serious amount of time and energy to try to do so. If one looks beyond and way down the road, one can catch a glimpse into why medical science moves so slowly. Why does it take so many phase 1,2, 3 trails etc. to even get a simple procedure or new therapy past the point of so much skeptcism that only some extraordinary amount of capital and sheer will can move the ball. I gues it is the nature of the medical field, much like why is medicine the only industry lagging decades behind every other industry in adopting modern IT best practices, technologies, and solutions. There is no sane reason.

If John wants to retain a copy of the last document or aonyone else, please grab a copy at your convenience. I'll keep them on dropbox for another month or afterwhich it will get cleared out during the following purge.

Thanks again for your time.

katenorwood said:

Hey Don !

I think that most people going through tx's follow their doctors advice to the tee, not that they don't want knowledge.....but once faced with the cancer terminology they are scared beyond words.  I like what you said about advances moving slowly....maybe because we as survivors aren't out there asking the hard hitting questions.  PEGS save lives, and also contribute to quality of life for many.  This is but one faucett of the C-world we live in.  I was scared beyond words when faced with a rare form of cancer...no clinic had written documentation on for tx's or what this cancer really was, including our ACS.  Oh they knew the right words to scare the hell out of me....but no updated information.  I am impressed with your efforts, and commend you for trying as I said before thinking out of the box.  You are on the right track with trying to get information out there.  Maybe...as advancements are being made with geno-typing and personalized medicine.....we will still see a cure in our lifetimes.  But for now, our site has given many the knowledge to get through the tough tx's with dignity and the knowledge they're not alone in the fight.  Thank you Don for caring and wanting to make a difference !  Katie

Katie,

You are a sweetheart and I do need to consider that this forum is convened to support those who are facing true life and death illness. So, understandably, it is filled with minds and emitions and fears and other deep emotional feelings that impact every word that is spoken and consumed here. Many are deatly frightened by going through cancer treatments and the unknowing of it all. There is no guarantee, no one who can say it is gone, never to return, or even that some side effects from the treatment like your teeth falling out and your jawbone disintegrating won't occur. It can be a truly frightening world to live in each day as cancer patients and survivors.

Every day we read about recurrence and failing treatments. Who would not be unhinged by reading this every day, knowing you could easily be the next one. That said, it baffles me who can possibly argue that education and knowledge of a relevant cancer topic can only provide net benefit to their own battle to learn and fight the disease they now have.

How can being less informed and knowledgeable and informed be a good thing? Katie, coming back to your point, there may be many here who are deatly frightened and just open their eyes just enough to see what they are facing next. Different people handle stressful situations in different manners. Some get very aggressive and proactive and want to pilot or at least co-pilot the battleship they are on as it navigates the treacorous seas of cancer treatment and recovery. Others prefer to just find a corner where they can grab a blanket and ride out the battle and pray and hope for the best. This I understand, yet in the range of responses I still do not see where having less knowledge and education offer more benefit to anyone facing cancer diagnosis and treatment. 

Lastly, nobody here can force or encourage anyone to read or digest any information that may be there for their consumtion. The supertread FAQ is a great example of how making education and knowledge available is a good thing for most. If you rather not seek more details do not read them. If you feel better reading and learning, then read them. Why not let the reader decide what and if to read and what to accept, reject, or otherwise question further the meaning and potential impact to their own situation.

Thank you Katie for your thoughtful comments. I learn every day.

Viilik70 said:

I've had quite a few PEG

I've had quite a few PEG tubes in and out, but my opinion is they are worth it while recovering you will get all the nutrition you will need and actually help you recover quicker than if you can't swallow all the nutrition you need the conventional way. They are not a big deal to take out when you are done. Basically if you have the balloon type you suck out the saline and pull out the tube and from time to time they do this by themselves and you have to have a new one inserted which again is not a big deal. They are not fun I admit but a necessary evil sometimes. I would worry more about the side effects from treatment and what side effects you can live with the rest of your life because your doctor is not the one living with them we are. They are selling you a service and when I do think they try to steer you right way, just make sure you get the big picture so you can plan for your future.

Hi,

I believe nobody is arguing that PEG is not "worth" it, more we just want to allow people to make an informed decision. What are the tradeoffs and is it really needed in your case and if so at what stage is that decision made.  You are quite experienced so I would encourage your participation here as you can share your actual experiences with others.

And your last point about the patient understanding the big picture and understanding and controlling their future is so right on. That is what this whole issue is about - just providing objective inforation and topics of debate so each patient can review and ask questions of their providers to fully understand what sort of decision they will make on this aspect of treatment. 

And when the medical field is so split themselves on the topic of PEG, then there is no way one should go in with any preconceived decision in their own case and maybe some education and discussion will proivde a better more custom solution for each patient in their own situation. The more I work on this the more rediculos the notion of GET-DON'T GET PEG becomes.

Hondo said:

To PEG or not to PEG

Hi donfoo

I live on the PEG tube and will for the rest of my life. I lost the ability to swallow food about a year and a half ago and it has been a lifesaver to me. I also found that I can eat anything I want through it just need the right blender. I am now using the Nutribullet and it has made a big different in my life. With other blenders they are so big I was confined to staying home, but with the Nutribullet it is so small I can carry it with me anywhere. I am a vegetarian but still eat fish now and then when on the road, all I do is to pop a fish sandwich in my blender with a little water and instant PEG tube food.

 

I still work full time for a Diving company and still have my online ministry that I do. I travel a lot and I am now able to travel outside of the US when requested. Life after Cancer and Cancer side effects is now starting to get back to a new normal. PEG tubes have their problems like anything in life, you just have to look at the good they do and keep moving forward.

Take care and God bless

Tim Hondo

Hi Tim,

Thanks for sharing your story about being creative in finding ways to PEG on the go, so to speak. Having that little blender allows you to have a lot more flexibility while out and about. Not sure how firing that up in a restaurant works but I know when I used a baby good grinder, nobody gave two winks.

Also, nice to hear words of encouragement that life goes on after Cancer and we all find our unique ways to adapt.

If I may ask Tim, what is the background on how you came to have the PEG and having the swallow issues? We hear all the time about one concern about PEG is on the ability to continue swallowing properly. Maybe sharing your story would shed some light on us. Thanks Don