Hi all!

I FINALLY got to NYC today! It was an 11 hour flight! 7 of them were spent on the tarmac at Atlanta Airport. Weather kept us grounded for hours, but I finally got here after changing planes three times and even airlines once.

It's 12:30 midnight here and I have my appt at 10:00 am tomorrow.

It's good to be back in New York, I've always had a warm spot in my soul for this town.

I'll be meeting the team tomorrow and if they are on par or better than MDAnderson this may be my first choice...One can't help but feel alive in the energy here.

I still have the tingles and it's a big annoyance. To check on that, on the surgery results, healing, etc. I am meeting with the Stanford team on Monday.

I want my incisions checked over, and ask them about the tingles and headaches I've been having.

Houston was refreshing in their "team approach" and what I keep saying is how much humility they all seemed to have despite their tremendous rankings.

It is quite amazing to see almost an entire mid-rise dedicated to the art and science of HEAD & NECK cancer treatments, I doubt Sloan will be as extensive.

I'll let you all know...Thank you for the positive thoughts, prayers, love and good energy!!!

Ian, I've been following your other posts on both boards, and I have to repeat my earlier recommendation that you consider asking for some anti-anxiety meds to help medigate the symptoms that might not have physical cause.

And, even if it is something serious, you will be better equiped emotionally if things are tempered to a more manageable level.

Have you contacted the ENT about your concerns? Maybe you should write a quick email or fax outlining the items you did here, just to make sure he doesn't dismiss you prematurely...Dr's are more careful when things are in writting (paper trail / liabilities, etc).

Eileen, yes, everyone I have seen to date is only considering IMRT, although I am still sold on TomoTherapy, but you'll see under my other post in "Currently in Tx", "Makeing a decision (again)..." there are a limited # of these out there.

MDAnderson said it is basically a marketing name, like the difference between 2 high performance sports cars, but I tend to disagree since Tomo takes a simultaneous CT scan at the start of EACH radiation session and automatically adjusts...

Then again, maybe I should skip radiation (just kdding! Joanna)

Hi Michael --

Good luck at Sloan, Dr. Pfister is great -- they are very organized there as well re coordinated care. Sloan is currently #1 (by a hair) over Anderson for cancer, Hopkins still #1 by a lot on Otolarynology, #3 on cancer.

I think Hopkins is the only one of these three centers with tomo on-line -- I will be getting that myself - but not sure.

You will find out that Sloan does not routinely do neck dissections, and then only post-treatment. It is quite interesting (and a bit unsettling) that there remains so much difference of opinion amongst the top people as to the best approach. As someone told me recently, treatment for HNC is as much a art as a science...

Good luck, Barry Cooper

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!!!!!!

With the preface that each one of us is different as far as the site and scope of our disease, I will say that 3.5 years post dx I am here and fine, and I can spit, having been the first person at my rad place to get IMRT. Frankly, having heard how difficult eating is for those who had standard rad before IMRT, I would not go back and change, even if Erbitux had been offered instead back then. So that's my two cents worth.

Where do I mail the 2 cents? (will you take a check) LOL

I tend to agree, BUT, I have heard so many cutting edge pioneers in this disease taking about the promise of Erbitux...

I'll figure out a way to have my cake and eat it too (even if I have to blenderize it after tx starts)

PS: Please avoid spitting in public.

Michael, as far as the dentist goes, don't just go to your local dentist unless you KNOW he has experience treating people with head and neck cancer pre and post radiation. It's hard to get a dentist that's part of a H&N cancer team to see you un;less you've soigned on there for the whole of treatment. or this has been my experience.

I had to ask around to find the right dentist in this town. Fortuntely, my ENT knew of a guy who has treated other poeple who went through rad (he was also recommended to me by other folks as well)and even more fortunately, he is freinds with the ENT so, even though he's so booked he isn't accepting new pts, he was willing to see me on very short notice and pull two teeth that I knew would need pulling before rad. You're right you do need to get that done soon but it's woerth going to someone who will really look carefully at all your other teeth as well and who you can go to for follow-up after and you won't have to fight to get in to see them quickly.

post script - I have to say that much though you liked the general atmosphere at Anderson more, it seems like they really slipped up letting you think you could do the Erbitux trial and have IMRT. I think I would pick the place where the rad oncologist knew those two things couldn't both happen. Sounds like that is the spot where there is better cross-communication between medical and rad. oncology.

Besides, by September, NYC should start to have lovely weather and Houston will still be incredibly nasty

Just my yankee bias showing!

Hi Michael --

I have a somewhat similar choice at Hopkins, was offered a trial of a newer EGFR drug (erlotinib)but since it started using IMRT, they can't change the technology mid-study, so if I opt for it, I can't have the tomotherapy technology. (probably the issue with your Erbitux trial although certainly IMRT was around when that drug first came out?).

I think you really want IMRT -- the advantages over older technologies are well-established. Is the radiation in Anderson Erbitux trial 3D-conformal?

Course you can always go to Hopkins and do the erlotinib/IMRT trial there! <gr>

Erbitux will probably be FDA-approved sometime in spring 2006, too bad it was not a bit sooner for us so available outside a trial setting.

You should also be sure to see a dental oncologist --

I go in Monday for simulation and more meetings with radiation staff, and dental onc later in the week I think.

Good luck,
Barry

Michael,

I can't give you much of a viewpoint one way or the other on the Erbitux option. However, having been treated in what seems like the Pleistocene era with general radiation, I have slowly witnessed the return of spit over time, with some help from Salagen along the way. (Also, as I understand it, I might not have been a candidate for IMRT anyway because of the nature of my tumor.) My point is that you don't have to assume that your salivary function is gone if you don't have IMRT.

I have to agree with Nelie's post about making sure you get to a dentist that knows how to work with oral cancer patients and can continue on with you post-radiation. There are too many potential complications under these circumstances and you want someone who can be prepared to anticipate them.

Cathy

Does anyone know of a SCC sensitive Dental Surgeon in Northern California or near?

I agree that I want to go to a specialist, and Stanford doesn't know any.

I can always get it done at Anderson, but it will take a week or so, and then we have to wait the 2 weeks after surgeon to do the simulation and start the radiation a week after that, regradless of where I am going for tx.

Barry, I think it I go to ONE MORE cancer center my entire family and Seth would disown me forever.

Although, the EGFR drug combo with IMRT at Hopkins sounds like the smartest choice... :-)