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... :-)

Ah, Michael -- I thought you'd come out to Maryland to see us and help us eat some of this cheesecake (we have now had even *more* food delivered from friends, including a large chocolate cake). I am hiding it as Gail doesn't want to bulk up and the cake is pretty tempting!

Eating everything I want is the only good thing in this nightmare -- we were supposed to leave next week for a month's birding in Australia, dodging kangaroos and cassowaries, and instead I will be fighting a more deadly sort of beast...

Barry

I just want to calrify that I didn't say, nor did I intend to, that you need to see a dental oncologist, though obviously that would be ideal. They are just very scarce from what I understand.

Just be sure you find a dentist who has experience treating other people who have been through oral rad. If you ask around, I am sure there are one or two somewhere in your area. I knew I had found the right one when he asked me with great concern who my rad. oncologist was because he thought there was one in the area who overradiated people unecessarilly. He is just the guy everyone recommends I guess so he gets all the cases in our area. Not that there are hundreds but if he gets all of them he has enough experience to know somehting about what the issues are. His willoingness to undertyand the issue of time urgency in my case was important too!

I wonder why they are waiting a week after simulation to start treatments. Did yu ask them? I had simulation one afternoon and treatments began the next morning. It took aprox. 2 hours to do all the scans and the mask etc. and then they were ready to roll. Did they all say this or just one doctor?
Barb~