An off-topic rant here regarding research in OC.

Let me say that it frustrates me to no end that Oral Cancer is not researched as heavily as other cancers. One doctor at the Barrett Cancer Center in Cincinnati once told me it was because of the false impression that OC is only developed by tobacco users and its their own fault. I don't know about you, but I know multiple people whom have never smoked, chewed or done anything with tobacco that are cursed with this disease.

Cervical cancer has been linked to HPV - what is taking so long to draw the same link in OC? Why are no studies being done? Should we consider an informal study and take a poll for OC patients and see who has HSV or HPV? These viruses can be so dormant that many people have them and never know it. Why did my ENT laugh me off when I asked for my wife's most recent surgical resection to be analyzed for HPV and HSV? It may be time for OC patients to step from the shadows and share our stories more widely so the stigma of 'dirty smokers' is put to rest once and for all and hopefully improve funding.

I might only add that the OCF site is full of information regarding the link between HPV and OC. One of our advisory board members, Dr. Maura Gillison at Johns Hopkins has published extensively on the link between the two and her information can be linked to from this site. She is on the cutting edge of the data related to all of this. The data is out there; the cause and effect relationship between HPV, sex, and oral cancer have all been made and published in peer-reviewed journals. What has not happened is; that the sitting group of currently practicing ENT's and Dentists have not gotten up to speed on the current information.

OK Brian
We do NOT need your head in the oven, and much as it galls you will have to convince the PR company that the modern tecno is DVD and books are OLD HAT.. I KNOW YOU CAN DO IT
Sunshine... love and hugs
Helen

Brian
I know that you dont do this for kudo`s but my goodness you deserve them. Your frustration is palpable, would a mass mailing from us to the pharma company be of any help? I will go buy a lottery ticket tonite, Thats the only way I could ever find the funds needed.

Marica
ps. I`m with Helen, please don`t put your head in the oven..it would make a terrible mess.

It's not even the technology, it's the subject. One would tell tales of survivors and their battles, cetainly worthy, and possibly of inspiration to newcomers down the path if the physical outcomes do not scare the reader to death right then and there. But what is the market for this book? Who is going to buy it? Then for the same money you could reeducate all these doctors and potentially (when combined with a public awareness push which we are continuning to do on TV and elsewhere, and would like to expand into print/magazines) you could reduce the death rates by bringing the doctors who are clearly not up to speed into the fold of those capable of recognizing a deadly situation early. The two are apples and oranges. I'm for saving the lives first. The book can wait.

As to putting my head in the oven....I'll have to find another means of ending the frustration. It's electric.

Brian,

You are obviously very knowledgable on the topic, I would like to draw your attention to a presentation made in 2003 in regards to gene therapy and valacyclovir. I found this link in my search for a link between herpes and cancer. It does not go into causality between the two, but explains how a cyclovir can possibly help in treatment.

If links are not allowed here, please edit my post and I will PM it to anyone interested.

http://www.baylorcme.org/update/presentations/butler/presentation_text.cfm

About halfway down the presentation, the author specifically gets into his use of an Adenoviral vector and the HSV-tk gene. I would love your opinion on this study and it's relevance to anti-herpes drugs and the future of cancer research.

And no I do not own stock in the makers of Valtrex - I am just very excited.
Fred

I believe that studies have and are being done that's why we know that there is a strong possibility of HPV16 being a possible causitive factor. There is much research being done on the virus link (for instance Hep C virus causing liver cancer). We also know that tobacco products and alcohol are causitive factors. We also know that 25% or oral cancer patients never smoked or drank.

More than just the so called "sin factor" are the raw numbers, many more people are affected with breast and prostate cancer, for instance, and that is more likely how the research dollars are allocated. Out of 550,000 cancer deaths a year about 7,000 are from oral cancer.

This is a list of the NCI sponsored clinical trials going on within 500 miles of where I live:

http://www.nci.nih.gov/Templates/doc.aspx?viewid=CF77634E-36E7-47C2-A88E-9E7B163D71F3&ReqUrl=%2Fclinicaltrials

compare this with breast cancer:

http://www.nci.nih.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=1454091

One thing is a fact - early detection really does work. We have seen morbidity statistics continually improve for most types of cancer as a direct result of early detection. This is one of OCF's primary missions - to get the word out.

Actually after this trial described in the power point presentation, the more successful things which involved HSV were done in 2004. Those trials used the virus as a vector...essentially a vehicle for carrying something into the cell, and something desirable not a negative. Since viruses can get past our immune system's cellular defenses, the question became, if we wish to alter the genetics of a cell we have to get into it first, and viruses became the most obvious means. Then they decided that gene p53 which controls apoptosis, or normal cellular death, was going to be the target. One commonality in cancer cells is that they are immortal. This is because gene-p53 is damaged in the dysplastic phase to malignancy. The switch (p53) that tells the cell to die on schedule, (our entire body is full of normal cells with programmed lifespans) or if the immune system senses that it is abnormal in some way is not there. So a novel idea was to attach a healthy version of gene p53 to a benign viral vector (HSV1), and infect a cancer-containing animal with it. Sure as anything, the virus did what it was supposed to do and got into the malignant and healthy cells, carrying p53 with it, which was reinstated in place, and the cell died as it was originally supposed to. This worked really well in the cancer cells, and of course in the cells that already had p53 it didn't do anything. (The virus infected both.) For sure this is a different perspective than you are describing in which the virus is the bad guy. But we are on the threshold of understanding more and more of all this. We thought that mapping the human genome was going to give us all the answers to which genes did what. We were ill prepared for the task still at hand, and that is figuring all that out. We actually ended up with more questions than we started with. It is not just the gene sequences, but also the various proteins (of which there are many) that interact with them. That makes the questions at hand tens of thousands of different variables more difficult to answer. We now know that cancer is not one disease, but many, hundreds or more. We are looking at the proteins that have to interact with a particular gene sequence to cause any one of them (cancers). We are moving towards targeted therapy, of which Iressa was one of the first. It was very effective, but only in certain patients, with certain genetic sequences, that were involved with certain proteins. This is all a gross over simplification of the whole thing. But we are looking now at therapies and cures that work for a particular sequence and eventually a cure that can be custom tailored to a specific cancer's genetic identity, following that a specific individual's genetic make up. Cancer is after all a genetic disease. But we are talking about two distinctly different things here

My mom's ENT put my mom on Valtrex last year for a period of time. I was skeptical, but eager to consider anything that may help eliminate the constant pain and frequent reoccuring sores mom gets. Unfortunately, in mom's case, Valtrex doesn't work. I'm certainly grateful that her doc considered it as an option though. You never know what may work given that so many meds are being used for purposes other than what they were initially produced for.

Fred, Thank you for offering your observations.