Ginny,

I am in Houston now - I don't qualify for the Green Tea Extract trial that my doctor referred me for - but they are screening me for the EPOC trial. To be honest though, I don't know that I'll do it even if I qualify.

The way they explained it to me - was that it wasn't necessarily a hereditary genetic marker - but more of a mutation of sorts where two genes get deleted and cause you to be high risk for recurrence. That is my understanding - however, I could be off base on that.

I just agreed to screening on Monday - and they have to obtain additional slides from my last biopsy as they didn't send enough to do the testing. Like you, I figure I'll wait and see what the results are and at least I'll have that info. However, the side effects of Tarceva don't sound too pleasant. From what I read - most everyone gets the rash and most people get the diarrhea and a lot have nausea....plus there is a multitude of additional side effects that are much less common. HOwever, you'll probably know quite quickly if you are on placebo by a lack of side effects.

For me, expense comes into the picture as well. Since this is a National Cancer Institute sponsored trial - there is no reimbursement to participate and since I'd be traveling from Cincinnati, that would be a pretty big expense, as I'd have to come back for another screening visit, and then at months 1, 2, 3, 6, 9, 12 and every 6 months after for 2 years. I don't know that I want to go to that expense for a trial. Now, if it were a proven treatment - that would be a different issue all together.

I am however, slightly annoyed that they insisted that I stay in HOuston for 5 to 7 business days for the screening and it really only required 3 days (which would have been one day if one of the doctors had not taken a vacation day at the last minute). They tried to reschedule me for the other doctor on next Monday, but I wasn't staying for that long with nothing to do and no testing that was being done and so they worked me in today (Wednesday).

Good luck and let me know if you enter the trial. I'll be a couple of weeks behind you if I decide to do it.

SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.