It was my MO who insisted that I get a PEG. I got it before I statrted any treatments. I hated the thing but was glad to have it. You do have to keep swallowing, though, and I did that by drinking water a lot. I also had the three "big" doses of cisplatin, spaced throughout my radiation treatments. I saw three doctors; my ENT who did the surgery, my RO, and my MO who prescribed the chemo, and kept an eye on my bloodwork. I also had a port for my chemo, which my MO also wanted me to have, so I wouldn't have "chemo veins".

Duffy

Yes, Something I can support your RO and husband on 100%
I was so focused on the Erbitux, I missed the line in your post that your RO was exactly like my RO on the Peg.
The apparently innocent question by a new poster:
"Should I get a PEG" set off two (three?) major "PEG wars" here on OCF in the past. No surprise that I was not only a fiery combatant but also poured gasoline onto the blaze, as I responded tit for tat to the pegophiles.
After rational discussion set in, it turned out that almost everyone involved was echoing the perspective of their RO.
Some poster's ROs made PEGs mandatory, most poster's ROs just urged it strongly, and a minority had ROs like mine and your husband whose standard was no PEG until and unless necessary. Amazing how each subset of patients conformed to their RO's expectations in how they fared
For what it's worth, I had no PEG and never once needed hydration nor any IVs nor did I have any adverse complications. A year after TX I took my wife on a Victory (in hindsight a little premature) tour of Rome & Venice and I ate every type of delicious Italian food with no problems nor restrictions on it being "easy" or "soft".
We've had peace on the forum with a consensus that getting a PEG is a personal decision for each patient with no right or wrong answer .
Now that I am on lifetime feeding tube, my feeling is that unless the patient has strong psychological motivation to avoid a PEG, with the concomitant psychological boost when he/she gets thru without one, and the support of their RO, it is clearly easier to get a PEG since you can always get swallowing therapy afterwards if the PEG does cause swallowing problems.
Charm

wow Charm...a post about PEG Tubes and you have a balanced and diplomatic post about it...did I sleep too long and wake up in 2017??

Sorry brother had to say it! hahahaha

Actually I read a couple of NewCharm's posts today and I'm wondering if someone else is posting under his name while he's tied to a chair.

Duffy writes:

"and the RO said �if it were him� he would enroll and hope to get the Erbitux arm."

This was also the attitude of my doctor buddies - one from a neurologist standpoint having had to treat neuropathy and other side effects of platinum-based therapy, and the other a pediatric oncologist standpoint. The cetuximab is a gamble, but the cispatin is a gamble, too.

The one question I would ask about now is whether or not there is any radiological evidence of matted lymph nodes. If there isn't, that's great. If there is, the followup question would be if any change in protocol should be considered in light of that fact. Here is a link to one of the forum stories on it: http://oralcancernews.org/wp/new-me...throat-cancer-to-other-body-parts-found/

Remember, this is a SMALL study and the prognostic value of the matted nodes may not be very accurate for the population as a whole.

David, I may have to call Bev after reading that insight and see if they haven't been taken hostage!

Eric & David

Very funny guys. Although Bev did take my temperature
Just doing a lot more yoga - even decided to replace my 40 year old mantra with a kinder gentler one
[quote]Strength in Body, Peace in Mind, Love in Heart [/quote]
My old one was:
[quote]I am a sacrificial flame in the fiery will of God[/quote]
We will see how this lasts once someone pokes me or advocates woo woo medicine or links to nonsense.

Charm

Well the IRS tried that Kinder Gentler approach a few years back but I guess most of their employees have forgotten about it now.

An old saying goes "An indulgence that allevates stress is often a better choice that an sacrifice that creates tension." So Charm don't harm yourself by trying to be someone you're not genetically disposed to be. lol

Thanks, Charm, for the references�finally tracked it down. I was able to get at least to the abstracts of the studies referenced by Dr. Jimeno. Am still digesting those, as I have to filter through the medical jargon to get the gist of what I can understand!!

Yes, Kathy, I refer to my RO only because we have not been able to get in touch with the MO to meet with him yet! We and the RO�s staff have been calling them to try to set up an appointment. Maybe he will give us a different opinion on the PEG or feeding tube. I certainly will keep your advice in mind.

It also helps to hear you-all think Dr. Gillison is top notch and that a study with her name on it should be �what�s the word�not safe, but with good chance of a good outcome. My husband went over and signed the papers today to enroll in the trial, after much deliberation. I think we are both comfortable as we can be with the decision.

Thank you again for the input.

I don't have much to add to the discussion here, but I would like people to know that OCF is a funder of RTOG1016 (part of your donations at work), and purchased and disseminated 100 iPads preprogrammed with a questionnaire that all patients enrolled in the clinical trial will be filling out regularly during their treatment visits. OCF is trying to access the quality of life of patients during and after treatments regardless of which arm of the trial they are in. Most of us know here that QOL in patients is a grossly over looked piece of the puzzle. Improving that starts with gathering data on what the experience is really like in an objective manner, not heard second had from treatment facilities, but as expressed by the patients themselves.

As others have said, working on a trial that has Dr. Gillison's participation is very taxing but fulfilling. She is driven to find the answers, and OCF and I a proud to be working on our 9th investigation with her as participants, recruiters, funders, and data compilers. I am particularly eager for this trial to be filled completely so the data faucet will begin to flow.

For those that have been through it Cisplatin treatment is not walk in the park, and this is a first look if a less toxic monoclonal antibody will have the same clinical end results when replacing it.