Reasonable people can disagree without being disagreeable. While my PERSONAL not CLINICAL opinion is that doctors and forums who advocate procedures be applied uniformly whether or not an individual one needs it are wrong and need strong voices to make them reconsider and do BETTER; flame wars won't accomplish that. One only need to look back at breast cancer treatment to see how defering to doctors following overtreatment regimes worked out (not too well). Brian's passion and concern leaps out from his posting and I should have recognized that typical posters on this forum may be more likely not to be comfortable nor even able to have good doctors get better through dialogue and challenge. Yet it needs to be done and I worked hard on being "the patient from Hell" (good book).
I was indeed very lucky, but NOT in any reduced mouth sores, mucositis, or ease of swallowing. Each ensure plus took a half an hour to finish, with one sip (not a swallow) then rinsing out the glue like mucous with seltzer water (15 cans a day of seltzer). Sure everything I forced down burned and hurt, but that's where pain medication helped (since I was taking it anyway for the peeling skin and major radiation dermatitis)
Where I was very very lucky was in getting a top notch medical TEAM at one of the best CCC: Lombardi Cancer Center at Georgetown Univ in Washington DC. I had doctors who took the time to individually evaluate me rather than apply overtreatment protocols like PEGS or NDs. Doctors who were willing to let me decide on just Erbitux and IMRT rather than the "gold" standard of cisplatin, Erbitux and IMRT. Was it easier for me than most, with a medical malpractice background and experience in evaluating and understanding medical articles and journals? Sure, but unfortunately, given the paucity of real information on oral cancer, it's not that steep a learning curve. True, we disagreed on the PEG, but that's because ironically they just used the weight factor in looking over the charts which Brian correctly notes is not the way to evaluate this. Once I was able to convince them that my lean muscle mass had increased dramatically from my skinny marathon days, they did the responsible thing: accepted my right as a patient to take risks even if they disagreed. I still bug them on follow up visits on when they are going to start a real exercise program instead of working 15 plus hour days and being as unfit as the general population.
That said, this will be my last post on either PEG or ND, since these are obvious hot buttons on this forums and my experience is that despite my opening remark, discussions on true believer issues invariably becomes disagreeable. There are lots of other topics and advice here where the individual's experience is indeed valuable and probative, i.e., if a poster notes that it was a full year and not three months before their taste comes back, that is comforting to those of us still dutifully chewing cardboard.
So keep up the good work