Actually, it is amazing how many doctors (even at Hopkins, the "hotbed," so to speak, of HPV-HNC research). Barry went to see a neurologist there to have his benign essential tremor checked out, as he had not seen a specialist about it for about 3 years. Had it worsened over time and if so, should he up his meds? When he told the doctor that he had been treated at Kimmel for throat cancer the first thing the doctor asked was, "oh, were you a smoker?" -- Needless to say, we both enlightened him !

The answer on the tremor was it had not progressed. He also asked what chemo drug Barry had. We told him that Barry's chemo drug (carboplatin) rarely caused peripheral neuropathy, nevertheless he also tested Barry for that -- compared feeling in his feet to elsewhere, etc.-- and found no problem.

Now, David -- JoAnne's answer pretty much sums up what you have to do. I would start by googling Dr. Gillison and getting her contact email, and start from there. There IS a lot of time involved, we are up and back every week or so but as JoAnne noted they will work with you and you local doctor to reduce the time demands if you live out of town. However there is no compensation involved so there is the issue of travel costs. Under certain very limited circumstances insurance may reimburse for trial participation but I would not rely on that happening.

Gail