OK, so with a direct ask of the moderators - I asked if any post OTHER THAN the salespersons post had been deleted, and that was a no. I have no reason to think otherwise as I know how even keeled Christine is. Regarding the removal of the salespersons post. These forum are for survivors, patients, family members and occasionally a medical dental professional (who we ask not to identify themselves as such for liability reasons). Unless OCF has OKed prior to any posting, what a company, university rep, researcher, media person, or anyone outside that group is going to put up, this forum is not for their input. Their posts will be taken down.

The participants of the forum are encouraged to speak from their personal experience. This is a different thing. It also infers that their comments are not an absolute, but their singular experience, which may or may not apply to a biologically different tumor, etiology, or human being. They may be enthusiastic about the outcome for themselves, and others may have anecdotally similar outcomes, but they are not versed on what is happening with that drug, technology, etc., what interactions it has with other protocols, what populations or etiologies is does not work equally well for, and the list goes on. Therefore, while they certainly can make others aware of something that they found useful, once they become advocates for it, their role has changed. They are advocating for something that they do not have all the information about as I just stated. This is a razor's edge. If it worked for you it is appropriate to say so, and suggest others talk to their treating professionals about it, as those patients and their treatment team will have all the information necessary to decide that it is or is not appropriate for them, none of us do. This is how we learn from each other.

We take down and ban posters EVERY WEEK that have an agenda to promote something. It can be as crazy as you can imagine, or it can be a rep from a legitimate dental or medical company. We don't let salespeople, who have an unknown basis of knowledge, post opinions, suggestions, or comment on these forums. That is a hard line in the sand. They are not someone that has been through it, they are not doctors, and while they may be well versed on their product, they are not experts.

I have just spent the last four days with researchers at the Head and Neck Cancer Symposium in Phoenix. There was a ton of new information presented - and some things we thought we knew about H&N cancers, HPV, and certain drugs, we actually had wrong. This is the nature of medicine and research. It is ever evolving. This is one of 9 cancer conferences I will attend or speak at this year. This does not make me an expert. I will also every week be interfacing with researchers that are funded by your donations, and I will be interacting on 7 oral cancer task forces that I belong to from the government to professional medical dental societies. What it makes me is someone that understands completely the long road to know something for certain, and how many ways there are to get it wrong. This boils down to one idea. These forums are read for content. We try to correct things that are scientifically inaccurate, and remove things that potentially are harmful. To do less would be irresponsible. Again, I am not an expert, but at the end of the day I am responsible for defining what has efficacy and we will discuss (with the backing of OCF's Science Board) or what topics and information is too thin scientifically to be appropriate for us here. You can see how seldom I intervene in the discussions. That is because we have a group of people that appreciate the nature of these boards, and understand that they belong to a group in which scientific rigor is important, and they like that. They also behave accordingly.

IF something is taken down, unlike if a post is edited, there is no mechanism to leave behind the comment that that has taken place, the post is just gone. It takes many hours a day to monitor these boards, greet every new comer, edit, answer questions, and wear a black hat occasionally. My personal policy for this I have asked Christine and any other monitors to adhere to. The first rule of which is regardless of being right or wrong, posters who are rude get their posts taken down. Period. Civility reigns here. Disagreements like the PEG wars, (more on that later since some interesting new data has just emerged) are fought here, without name calling, snide remarks, or passive aggressive behaviors. I usually have had some PM time with someone that has become a problem tone-wise or information-wise, and there are several posters here that know this to be true, but if they do not listen to reason, the bottom line is that these boards are not a democracy. Repeat offenders, your posts will be deleted. There is too much important work going on to have a multiple posts back and forth with someone for the umpteenth time arguing about if something was stepping out of bounds or not. Luckily this whole thing seldom comes up, and with this group of supportive and knowledgable people, it is a rare occurrence.

Anyone who would like to have it be a free forum, please note that there are now three on FB, (which will catalogue and sell everything they learn about you to anyone willing to pay for it) one of which was run by a friend of mine Mike, that have imploded because there was no control of what the content of the room and forum was. Mike finally just walked away from his group of several hundred people, fed up with the bickering and how much work it was to keep things on track. A couple others have sprouted up, but they are in arguments about science, attitude, appropriateness of what is being put up and so much more already. When you are hiding behind a screen name on an unmoderated forum, I do not believe that it is a healthy environment, and it sometimes brings out the worst in people. If you like that confrontational environment, please feel free to join those groups. There are other boards from other organizations you may choose to join as well, but we have watched them ouselves, and had others tell us how poorly they are monitored for correctness of information being put out. This is a difficult task as you have to be on top of what the current information is, you have to know how to dissect a published paper to decide if it is biased, or so much junk science paid for by a commercial company in the background, and much more. Our posters here are really good at sifting out the marginal stuff, and we don't see so much of that. Kudos to those of you that are the backbone of good info, you know who you are without my pointing to you.

So there you have it. Long winded as usual. I would hate to loose any posters over these rules, but we may. Bottom line the foundation has rules because they are necessary. We tried it without so many restrictions in the beginning, and I was not proud of what we had. It has taken 14 years of evolution to get to the rules that we have, and for the most part they work. They will not be an environment that everyone can live in. But no person coming here will be spoken to in an inappropriate manner, no sales person will post on these boards, no one will try to persuade you to buy anything, no privacy that we can control will be breeched. We will all do our best to help those who need it at the level that we can even if it is just moral support; which while I have spoken a great deal about science, is vitally important.

I would like to thank the people that watched this threads spiral downward and took the time to PM me with their candid observations.