Just got back from my appointment with my MO and he was sharing just how interesting and provocative Dr. Gillison's presentations on HPV were at two conferences he attended. I was proud to tell him I am a member of OCF which under Brian's leadership sponsored and encouraged her research. (I left the OCF cards in the waiting room as usual. )
We were discussing how colon cancer is now considered two different diseases depending on the KRAS gene in terms of treatment but that oral cancer doesn't seem to have that breakdown (I was seeking reassurance about my choice first time to do Erbitux). The point of this rambling post is that my MO felt that HPV has the potential to do the same thing for Head and Neck cancer: almost two different diseases in terms of treatment and outcome depending on HPV status. We did laugh about how this was the first time in my life I had wanted an STD test to be positive. I know DavidCPA has been preaching this forever but until now I had not heard it from my medical team. I did mention the informal very preliminary results of my posting about HPV negatives getting more recurrences and suggested it would be worth looking into,

It has been a long road since my first conversation with Gillison in 2000. Back then she was just a young upcoming researcher with some interesting, but unproven ideas. I am very proud of the fact that OCF was able, especially in the early days, to give her money for small proof of principal studies, that attracted the attention of the big fundeers like the NIH/NCI. Now we are no longer looking at such small groups of people, as we have co-sponsors like the NCI, and Maura has become the research equivalent of a "rock star."

But make no mistake, that while I wished for the foundation to go in this HPV direction, it was the many, many individuals that walked at our events, that for years have regularly sent in their donations, that told someone else about OCF's efforts to raise further financial support, that made the effort possible. OCF has never received the big grants from corporate sponsors, but we have had hundreds and hundreds of small donors that believed in us. A sad truth to many of our donations is that they often come as gifts in lieu of flowers when one of our own reaches the end of their battle. Maura Gillison is about to publish the results of the latest work on oral cancer and HPV, and I am proud to say we continue to be part of the financial sponsors of this further understanding.

For those of you that are unfamiliar with the sequence of published, peer reviewed information that this collaboration has produced (all published in highly respected journals such as the New England Journal of Medicine, the Journal of Oncology, and the Journal of the National Cancer Institute) it includes papers that established definitively that HPV16 was not only a cause of OC, but a unique etiology, and not part of a synergy with anything else such as tobacco. The next paper established the anatomical sites where HPV tends to causes cancers. Then the paper that defined the completely NEW demographic make-up of the people that were getting oral cancers from HPV16. Then one which established the survival advantage that viral OC patients have, then the one that defined the patient's HPV status after treatments. And it is not over, Dr. Gillison has a path of exploration that will continue for many years, and OCF will continue to be her supporter.

Those of you that have supported OCF, have been part of this wealth of information. Information that is changing who gets screened, and eventually how treatments may be modified to address the uniqueness off this particular disease. People who care and are engaged, can change the world.

My, OUR, job is not done and judging by a conversation I had yesterday, is a long way from getting the HPV message out there to those that need it. I received a call yesterday from a Moffitt OC patient who has been recently diagnosed with SCC and who first went to an ENT who was the one that did a FNA and found his cancer. You know me, I started grilling him on his age, tobacco use, location of the Primary, where the cancer was found, etc, etc. He seemed puzzled and finally said why are you asking me all these questions? After getting his answers I told him that being a male, 60 years old, non smoker, casual drinker, Tonsil Primary and confirmed mets to one node that he fit the profile for HPV and I asked him had he been tested.

Ugh he said that he had never heard about HPV but he did say that Moffitt said they wanted to run more tests.

One of my patients that has worked for a local gynecologist for many years was in the other day. She and I were having a conversation and the topic of Guardasil and HPV came up. She was well versed about HPV and cervical cancer and she told me that they encourage all of their young patients to get vaccinated.

However, she had never heard any mention of the connection betrween HPV and oral cancer. I gave her my typical sermon and handed her a flyer that I had put together about OC, HPV and the VELscope. She promised to bring it to work and educate her doctor as well as the staff.

I wonder if Merck is doing any marketing of their vaccine to medical doctors whcih allows the opportunity to discuss the
benefits in preventing other cancers besides cervical.

Brian, do you have any time frame on the results of the testing of Guardasil in males?

Jerry

They are precluded by the FDA from discussing (outside of research circles) anything other than cervical. The approval for boys will likely go through late this year, the indication will be for genital warts.... making it legal for docs to vaccinate boys, but the help in head and neck will be the same even though they can't market for that indication. They just will not be able to talk about it to the public. That's the FDA.

So much for separation of Church and State.

Everyone of my patients knows about the connection between HPV and oral cancer. It was tough for me to broach the subject at first, but I am more than comfortable with it now.

I urge everyone to tell their friends and relatives about the connection and in some small way, I hope that I am helping the cause.

Jerry

Is the flyer you put together about OC HPV Velscope available for me to see online or otherwise?

Thanks,
Cheryl aka Brick

Cheryl,

I have sent you an email regarding the flyer.

Jerry

Hi,
It's thanks to here that i found out that HPV could cause oral cancer. When I asked Martin's consultant if he had been tested, he said no, because it doesn't change the way he would have been treated. When I said that since it was contagious i could have it, he said that if Martin has it, then I have it. Alarm bells!!!! But he said:"Just make sure you go to your smear tests". Ok, but a smear for cervical cancer doesn't always mean that they test for HPV, they only test if the they find suspicious cells.
Martin is really annoyed, so next time he goes for the test anyway. The plan is that if he does test positive for HPV I can ask for the test myself. I know it doesn't mean I will develop anything but it puts me in the more at "risk category", so maybe then I can ask for a yearly smear as opposed to a 3 yearly one.
Incidentally I have been waiting for the last results for me for the past 6 weeks and the silence is worrying me a tad (well more than a tad to be honest). I am phoning my nurse Tuesday to ask her if she can trace the results.
Am I being aver cautious or is this a good idea to ask for us both to be tested?
Cecilia