Michael,
for the instutions to qualify to be a NCCN member they HAVE to be conducting clinical trials and other basic research to find a cure for cancer. Believe me, if they could find a cure for cancer just think of all the money they would make on geriatric care. There has been an urban myth circulating for years that the big boys are holding back on a cure because they make so much money on treatment but it ain't so. There is not one scintilla of evidence to support this. Problem is, it is more of a medical art than a science and there is disagreement many times in the NCCN guidelines, and it is clearly stated. Further compounding the problem is that all of us have a unique spin on the disease and there is no formula treatment method - but the NCCN guidelines are of result of all 18 or so member institutions inputing what works for them. This is the best there is to offer right now.

So you are a stage IV, have already had a MRND and you have 3 involved nodes -what is there to decide? Radiation and chemo are your best shot to stop a recurrence which could be a major problem. Late stage cancer is ALWAYS a multi-modality type of treatment protocol. Chemo, by itself, has yet to be proven effective in H&N. Today it is merely an adjunct to the radiation and (specifically Cisplatin) gives as high as 13-16% better odds for survival over radiation alone.

Iressa showed great promise until they did a large double blind study (phase III) and found the placebo to be more effective. These are the kinds of studies going on with Erbitux right now. They just don't know yet why iressa, for instance, was only effective 10% of the time. Although that 10% had a very dramatic result. My gut tells me that they are close to solving this. Do you think that all of us millions of baby boomers want to end up with cancer? We solved the hair thing, the ED thing and now it's the big C - aren't you glad that they have their priorities straight.

But that doesn't solve the immediate dilemma. I went to UCSF because the RO there is considered the best in the US. She's also a clinical professor of radiology. They see a lot of H&N patients at Mt. Zion. If radiation is your issue why didn't you try them?

Your dilemma is almost as bad as picking out aspirin at Longs drugs. There are just two many choices. One thing for sure - there is very little room for mistakes in late stage so choose very carefully. Your focus has to be on survival number one. QOL has to take the backseat.

I am sorry if my previous post sounded a little harsh on you - I was just sharing my feelings and not judging you. If I were your shoes I may be doing exactly the same thing. I did a lot legwork researching my team and had complete confidence in them - but I was a pain in the ass - asked a million questions, had to have ALL of the reports, test and scan results, etc.


Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)