OK, I've only got a couple minutes here but this posting needs to be answered. As far as Dean Edell MD goes, he doesn't have a clue about most of the things I've heard him talk about, and where he ever got the 90-10% numbers is beyond me. (I talked with him a year ago and he had no interest in telling the HPV oral cancer story.. .. My how things change. Not on any source that I have ever found from the NCI, to private institutions, has anyone ever pulled that 90-10 ratio out of a hat. So his fact checker that helped him with his story got it all wrong. The number that is quoted by the ADA, NCI, OCF, and all others that I see is always 75-25... but get this, this number was one guys (Mashberg) BEST GUESS in a paper with no scientific study behind it years ago, and it has become folk lore and fact by 0 challenges to it over the years. There hasn't been a peer reviewed study that has ever yielded an exact number, including the 75-25 one, which is actually from ANECDOTAL INFORMATION derived form a variety of sources, and is a best guess today. Last week I talked with our board member, Dr. Maura Gillison at Johns Hopkins who, following up on much research that was done before her, is the one that broke the HPV cervical/oral cancer relationship, which is a fact. She is one of the world

Right on Brian! I love it when you get yourself all riled up!

Danny G.

Wow Brian,

that was an interesting read.

we need to do more to support your efforts.

one area that i think can be useful is to get OCF listed on the US Gov list of charities for gov employee check off... that way it comes straight out of our checks... it the United Way for civil servants.

should i get the info so that OCF will be listed in the next sign-up period?

keep moving those grains of sand, but don't forget to take time to enjoy the stream too.

cu,
larryb

Expanding on my thought, Has anybody given thought to the possibility of Chernobyl effect? My radiation Oncologist said that my cancer started 7 or 8 years before my diagnosis. I recall speculation that we would see an increase in cancer worldwide because of that event, especially lung and digestive tract. Then there is the floride issue, yes there are concerns since the 50's about the long term effects of floridated water and even studies that seem to show cause for concern. Then there is arsenic, a known cancer agent, found in many things but most notably pressure treated lumber (something I had a lot of contact with about 8 years before my cancer), or lead another item that I have had occupational contact with. Also fungi! many fungi create strong carcinogens as a biproduct of their life cycle....

larry-b.. That would be fantastic. That's what has to happen!!! We all have to look around us and figure out what can we do to make it a reality. Danny talked to his girl friend the TV executive (he didn't say if this was pillow talk or not...you know, getting her to agree to something in a moment of weakness) but however he did it, that break is HUGE! HUGE! HUGE! Everyone has a contact.

One guy wrote me today and said that he belongs to a cycling club in DC. There are 300 members. Would I be willing to silkscreen 350 t-shirts with the foundation

Mark, while I don't usually don't like to speak in absolutes, we know what causes our oral cancers. Other cancers are more obtuse. Everything you have said is true, but not necessarily for oral cancer. If you didn't end up here through lifestyle choices ( alcohol and tobacco) you almost certainly came to it through a virus. Only about 5% come from unknown causes.

WE DONT KNOW S--T!

BUT I absolutely loved the post before that! It made me dizzy reading it...talk about fire-me-up!

If we think it's alcohol then remember the hundreds of compounds including tars and resins dissolved in the "alcohol" like charred wood compounds in the case of whisky, scotch, bourbon, all of which are aged in charred oak barrels. Or in the case of beer "pun" the various chemicals that are introduced as preservatives. OH and lets not forget the pesticides used on the grains as they grow. Or how about the barbecue? we have heard for years about the cancer agents in BBQ food. Or better yet lets have a shot of whisky and a beer during our steak BBQ dinner,and sit around campfire afterword. Think of how many chemical compounds are in that! Yes we think we KNOW what causes oral cancer BUT we don't yet have anywhere near a complete list. I hate to say it but that less than 5% sounds like a Dr. Dean kind of number. A slightly fudged factor! After all look how far off the numbers were for HPV! (yes I was the debate captain)

We barely have the slightest idea what causes this crap and MUCH worse we barely know how to cure it!

Mark, the cause of my tonsil cancer is the biggest mystery in my life that may never get an answer to it. I never smoked and never drank one can of beer in my life. I have a very healthy family history with my grandparents and parents dying at a very old age. When I was diagnosed, I was in my mid 40's, considered relatively young by my doctors to develop cancer. My oncologist told me that the EB virus in my body was at a very high level when I was diagnosed but he was not sure of the correlation between EB virus and the type of cancer I had. In Hong Kong, the number of patients with tonsil cancer was and is very small and if there are any, they are usually heavy smokers or those with very poor oral hygiene.The hospital where I was treated is the biggest cancer centre in Hong Kong and yet my oncologist could not give me valid statistics about my illness. He could only quote cases of NPC( nasophargenal(sp?)), a very common cancer among male smokers in southern China. In fact my oncologist told me that I was treated as if I were an NPC patient and that's why every time I had my appointment, he would send an endoscope to check my nose! He stopped doing this for about a year now. Before I found OCF, I felt so lonely because I could not find a survivor with tonsil cancer in my place to talk to. No doctors can give me an answer to why I am so 'lucky' to develop tonsil cancer. From the Chinese doctors' point of view, pollution, diet, a person's character,lifestyle, continuous stress, sudden encounter of life trauma.. can be possible causes.Even though my oncologist told me in the last appointment that I am at present free from tumor recurrence, my anxiety is always there since if the cause is not known, I have no way to put it under control. Is there really nothing we can do to prevent it from recurring?

Karen stage 4 tonsil cancer diagnose in 9/01.

Mark, you are debating the wrong issues. There are tons of things in our environment that contribute to genetic mutations that can potentially cause cancer. Some have to act in unison with others; some require that your unique chromosomal make up have a certain defect or missing piece that allows the process to start. This never going to change even if we find a cure for cancer

Brian,

You mention that for some 95% of us we know what caused our cancer; that if it wasn't alcohol or smoking it was viral. Is there any virus other than the sexually transmitted HPV or can HPV be transmitted in a any other way? Without going through personal stories I have lived a celibate life even before I was ordained. I wondering if I'm one of the lucky 5%ers.

I'm still trying to return my life to the "new normal" it will be so I'm not sure how ready I am to become an activist. I still don't know enough about most of this. I do know, however, that there are now thousands of families in central NJ who atleast have heard about this cancer and that there are a few hundred young people that know alot more about it then they did before my diagnosis. For now thats the best I can do.

As people are talking to thier bosses and supervisors and such to see what thier companys can do please know that I am talking to my Boss to help those doing the research find a cure.

Peace,

Fr. Mike