I am always amazed at how lightly most posters treat the risk of being dependent on a PEG tube and instead focus on getting one "just in case". Always having a PEG tube is indeed a major harm and a most foul experience. What is amusing is how most of us (including myself) echo what our Radiation Oncologist believes. Mine was a major opponent of PEGs and even today gives quotes about their risks, such as the one I posted a while back.
Must be something to do with the need to trust how the RO plots the radiation.
charm

I love a good back n forth!!

I assume Dr Trotti was not including those that would have ended up PEG dependent anyway in his 30% but again that's just my assumption as I never thought to ask that defining question.

Dr Trotti never told me his numbers until just recently so they didn't weight in on my decision to get it or not and yes I do admit there were times that I could have and would have used it but the unknown is would I have had any problems swallowing post Tx or would I have become PEG dependent. All I can tell people is what experience I had PEG less. I leave the PEG experience up to the PEG people.

Yes I did go to the ER 3 times during and post Tx for fluids and I have since advocated new patients getting a port just in case.

David

I agree that the PEG Dialogue is much more in keeping with the OCF spirit than the Martial term of war. What we need is more understanding of the deeply personal meanings we each give to the accouterments of oral cancer TX.
What was an eye opener for me was when one poster threw in the example of the oral cancer patients here who either forego Pain pills or take them very sparingly. Were they "heroes" for suffering thru what I "patched" over? When these few souls post their reluctance, they are as assailed for contravening the conventional wisdom as I was for my "Just say NO" stance on Pegs. Well meaning posters chime in that there is low probability of addiction, how pain can hinder healing, and are as incredulous that not doing drugs in this context can be meaningful to anyone. Yet I do not doubt that for them, surviving TX without narcotics is important somehow.
I'm as guilty as anyone in urging maximum medication and unrepentant but then I was taking many of these drugs for recreational purposes back in the day anyway.
Sometimes in my more lucid moments, I reread old posts of the "Peg Wars" and realize that to an outside observer, this "war" must look like the inter-Liputian quarrel between the Big-Endians (those who broke their eggs at the larger end) and Little-Endians of Gulliver's Travels by Jonathon Swift.
Charm

David and Charm,

I think it comes down to this: a patient has his or her reasons for the very personal choices they make regarding their approach to TX. As a caregiver, I don't always understand why my husband chooses one thing over another. And I often think that if it were me, I'd do it differently. That's the beauty of it--we won't choose the same things because we are individuals. Every choice we make is affected by our personal histories. We come here for many reasons--share our experiences, increase our knowledge, forge friendships, enjoy a few laughs, help others, and help ourselves. There are very few places where we can express our deepest fears and be among others who "get it".

Anita

Well......
Charm, endianness (byte order) is no joking matter actually. (And just to make it even more confusing there is a bi-endian (really)). This really mattered for data integrity. So if you are using a x86 x64 (mac, linux, windows system) you are a "little-endian" (or reformed)

Regarding PEG dependence/addiction: It is no laughing matter really, still I cannot get the picture of a seedy character in a dark back alley selling PEG tubes out of my mind ......


M

David
There is something way out of whack with Trotti's numbers.

Perhaps you misunderstood him.

Don,

No I questioned him on how large I thought that was and he stands by it as of 3 weeks ago when I took Sandy to meet him.

BTW Sandy started her Cis (3 bags) and rad Monday with Trotti. She must travel 2 1/2 hours EACH way until her Hope room becomes available!!

Dr. Trotti's and Moffitt CCC's numbers of 30% PEG placements leading to a life time dependency is startling!

Dr. Trotti is an esteemed expert and Moffitt is a top tier NCI designated CCC. His concerns and experience warrant our attention.

We need to understand this issue. We certainly can not defend the common practice of pre Tx placement of a PEG when the odds are that a third of patients will likely never regain their ability to eat again.

I had always assumed our local support group was a representative patient sample. Virtually all of us had PEG tubes and are fine, but apparently we are not representative of the norm.

Perhaps some of us can check with our CCC teams and research some studies for clarification on this issue.

That's a great idea and see if we can get an answer from other RO's with a large patient base.

Trotti's not big on the PEG and won't push it as long as you maintain your weight and that stand hasn't changed since I first saw him in May of 06.

My tube is acting up and I might have to see my gastro guy next week. I havent seen him since last fall so he may make me come back into the office instead of my usual quick replacement procedure. If I go to the office then I will definetly ask him what his stats are.