Just to add to the information. My brother was a smokeless tobacco user from the age of 2 years old (yes, 2 years old - my parents thought it was cute because he looked so much like our dad). He started drinking around 16 and I don't think he ever stopped. Probably 6-12 beers a day. Of course, my father blames it all on Agent Orange, which he himself was exposed to in Nam, but that's another story. My brother was not tested for HPV, but I've often wondered. Actually, he was a text book case. Everything they say can cause oral cancer, he did. Drinking, tobacco, hadn't been to the dentist in 12 years. He was a time bomb waiting to go off. I personally think genetics were involved as well since there are many others out there that do all the things he did and live to a ripe old age. I do strongly feel the HPV is something that needs to be looked into. I lost a cousin to cervical cancer about six months before my brother died. She was 41. It was right before all the information about HPV hit the press. She was otherwise healthy with no vises. Go figure.

Well, according to Dr. Gillison at Johns Hopkins (who is doing current research on human papilloma virus-16 and oral cancer and is on the OCF Board) -- Hopkins tests all the HNC patients for HPV and Dr. G. told us that 70% of their tumors test positive for HPV-16. Tha blew us away. An ENT surgeon at same institution said that his current patients are "over 50%" never-smokers and the percentage has been increasing in the last decade. It appears that smoking is not the primary cause of many new cases, perhaps not even a majority of them. The rate of never-smokers with oral cancer is far above the 8% that someone's doctor told them. I can't believe that Baltimore is a "hotbed" of HPV and the rest of the country is not!

Dr. Gillison has a paper in press on this changing demographic of oral cancer, she presented some of these data at a conference in May -- Brian has summarized these above. Our ENT (in private practice) says most of her new HNC patients are young (some in 20s) and non-smokers, and are presenting in the tonsil and base of tongue.

Hopkins will test tumor samples (even the path slides) from other institutions for HPV-16 -- however at this point it should be emphasized that it will not change one's treatment protocol (although response to treatment appears better and risk for recurrence less).

There is a new therapeutic vaccine for HPV-16 in clinical trial at Hopkins -- the trial for cervical cancer has been ongoing for over a year and the one for head and neck cancer has been ongoing for some months. My husband Barry is one of the participants. The vaccine is designed to stimulate the immune system to recognize and "clear" the virus, something which most people infected with the (ubiquitous) virus do, but for some reason some individuals do not. They may have perfectly adequate immune response to, say, influenza but not HPV. It is hoped that this increased immune response will, in turn, attack the HPV-containing cancer cells. Animal trials have been very encouraging but right now the human trial is only at the "what dose of vaccine will stimulate an immune response?" stage. It is far from being ready for clinical application. I have been posting occasional updates on the trial in the General Forum.

The current FDA-approved vaccine is a prophylactic vaccine designed to prevent infection. It would be a very good idea for boys and girls to be inoculated, perhaps more appreciation of the growing role of HPV in oral cancer will lead to this.

Gail

First of all, I would like to thank Gail Mac for writing to my husband and I sometime ago in response to a message I placed on the forum. I lost your reply before I could respond. Your message was very kind and encouraging to us both. My husband is a patient of Dr. Gillison's as well and has completed his treatment (35X radiation/cisplatin/tarceva) and will be having his neck dissection tomorrow with Dr. Tufano. His tonsil biopsy came back HPV positive and I would just like to "ditto" all that you said about HPV. I, myself, have been tested and am HPV negative. My GYN is very concerned about HPV and I took her a copy of Dr. Gillison's paper. She told me that she discusses the subject of HPV with her patients. She is hoping that in the next few years that the vaccine will be available to young men as well. I feel this subject is something that needs to be publicized more and I have discussed the subject with our dentist. I feel that dentists should be discussing this with their patients and I hope dentists become more concerned about checking people for oral cancer. Brochures should be out in their offices. I know you all were shocked when you got your diagnosis - having never smoked or drank and lived monagomously - and we shock people when we tell them about Rick's cancer and the HPV connection. Rick will be starting the same clinical trial with the HPV vaccine in the next couple of weeks. Would love to meet you and Barry sometime.

We have brochures for dentists, ENT