Hi Kim,
Thank you for your post and your concerns. I would like to fine tune a few conceptions and misconceptions. First off I have been in the medical device industry for over 30 years and specialize in radiological devices. Many of it in either quality assurance, clinical trials or regulatory affairs. So I am not really a "lay person" per se. However I am NOT a doctor and only wish to lead people to finding their own wisdom to determining their destiny.

My advice to people has always been to do your homework, seek out the most qualified doctors and institutions, consult with your doctors, question your doctors and be your own advocate. I don't want to take personal responsibility for anyone's treatment decision. The studies I bring to Brian and the group always have identified sources and come from credible research institutions.

I personally believe that the NCCN Practice Guidelines are the "gold standard". The NCCN customarily always recommends finding a clinical trial to participate in wherever possible, so treatment options are always in a state of flux, so one must do the footwork to determine their best course of action. And anyone who works in this industry knows that guidelines are exactly that, guidelines - not absolute and as Brian put it "NO TREATMENT GUIDELINE IS PATIENT SPECIFIC".

The study I mentioned about "one time" Cisplatin treatment is ON the OCF site, under Oral Cancer News, 3/25/03. And according to Brian "...study is quoted by OCF, I am required to have a panel of my advisory board approve its inclusion for appropriateness and correctness." And this is not the only study that questions the efficacy of Cisplatin in the management of throat cancers. I personally had it anyway based on information and advice from my team of doctors, knowing full well about the question of the risk/benefit of it and its toxic side effects. I regret that I mentioned the 6% improvement in outcome in the same breath as the one time treatment. The 6% improvement number came from another study, based on the standard course or 2 or treatments from a study at Johns Hopkins. http://www.hopkinsmedicine.org/press/2002/MAY/020518.htm

Unfortunately that study came out about a week after I was finished with treatment or I would have taken my oncologist to task for this. I suffered greatly and still suffer from the toxic effects of 2 Cisplatin treatments.

I cannot help but feel as if I have been personally attacked one too many times lately, either for trying to help people find a deeper meaning and solutions to this from a spiritual perspective, or simply attempting to aid others in making their own decisions based on whatever knowledge I can bring to the table (which is what a forum is -this isn't "Ask Mr. Doctor" after all), either based on my own experience, strength and hope or information I have gleaned along the way. I have always attempted to disclaim that my advice should be taken, only that we all have choices to make, we are ultimately the captains of our own destiny and that knowledge is power (and in fighting a deadly disease could mean the difference between life or death).

So with that I will be stepping down off my soapbox and taking a vacation for a while as I have my own ongoing treatment issues to deal with.