Hi Barry.

thanks for the feedback.

I think you will be getting excellent treatment at Hopkins if thats your choice (if I recall correctly).

I spent the entire day at Sloan today.

They are nice enough. Very NY feeling. (Scafolding all around, construction going on everywhere, not cosmetically oriented).

But, that's part of the NY charm I seem to like, the raw, nitty gritty reality that separates NY from the sterile, plastic Orange County where I am from.

The clinic itself is not on the scale of MDAnderson. They certainly have a dedicated team of Head & Neck staff, but not the size or scope of Anderson.

I ended up waiting over 3.5 hours for the first Dr!!!!! I really think that kind of delay is unprofessional and unacceptable, but I kept telling myself I am there to save my life, what's a few hours delay, plus they DID squeeze me in last minute as a favor, so no biggie.

Dr Pfister was fine. Very professional. I'd say more conservative in his prognosis and presentation that many other Dr's I've seen...He just very matter of factly said, "...well, we see a lot of your type of cancer, and I'd say you have an even chance of long turn survival.." (in other words 50 / 50)...I am SO SICK of hearing 50 / 50 !!!!!!!!!!!!!!!!!!!!

Makes me think of rolling the dice, and if the # is even I'm dead, and if it's odd I live. Quite upsetting.

Anyway, they offered me the study also (for Erbitux) of which I am very committed to trying.

They discussed things ad nauseum, and I left for lunch thinking that Sloan wasn't right for me.

I just had this feeling from everyone that this was more of a "job" than a "passion". Several people (not all!) at Anderson I am sure this is a passion for them.

Then, I met Dr, Nancy Lee, the H&N Radiation Oncologist. She's AMAZING! By far, the best Dr of all the 40 to 50 I've met during this ordeal.

She was careful, professional, yet friendly and down to earth...She had fun with all the stories of the different Dr's I've seen and made me feel like she would take good care of me. She went over all the expected side effects and said she can almost guarantee me that she will save my salivary function, for sure post radiation.

She said she is having 90% plus success rate!!! with SCC H&N...

I was feeling like maybe NY would be best afterall...

Then the bad news...

The Erbitux trial excludes IMRT radiation!!!

I can't believe it, but it does.

I asked her what I should do, and she said, well...what did Anderson offer, I said the same study with IMRT. She said "No way...it can't be with IMRT"...I argued with her that surely they would have disclosed this important fact to me.

Turns out, I studied the informed consent forms, the study guidlines and everything. Nothing mentions exclusion of IMRT.

So we paged the Research Nurse.

Turns out the Anderson study ALSO excludes IMRT for use with Erbitux!

What's going on?!?!

First of all, why didn't Anderson tell me this VERY important change? I had to learn about it from Sloan?

2nd, why would they have this limitation when IMRT is vastly superior in so many ways..?

3rd, is there any way around this..?

Okay, so that's the latest.

I'm heading home (to Mendocino) tomorrow AM. It will be good to sleep in my own bed again.

Monday, I meet with a surgeon from Stanford, I want him to check my incisions, etc make sure all is ok.

More than one Dr has looked at the tonsil bed and said that it looks like Dr Fee didn't get all the cancer!!??!!??

I called Stanford to find out who the Dental Oncologist is and they said to just go to my local dentist!?

I need to get my two remaining wisdom teeth pulled immediately (problably under General), so that I can start the two week clock countdown to my simulation regardless of where I decide to get treatment.

So, does anyone here think the promise of Erbitux is great enough to outweigh the benefit of IMRT.

Thanks!!!!!!