I totally understand what Brian is trying to express. I myself have passed over a thread, with no response, simply because I've answered that question at LEAST 10-15 times in the past!! Amy, I am not attempting to disagree with you, just saying how I feel about it. We have the ability to search on this board, why not do it? I can tell you that I did when I first came on here, and I searched it for days and days. I suspect that many post it rather then research it because it's easier on them. We have the ability to also privately email any member. In my years on here, I've gotten 32 private messages.
I have answered the same question over and over and over on here. Brian, is it possible to put something about the search engine on the welcome page, encouraging people to use it? Do we already have something like that on there, I'm not sure.

When I get back from speaking at the Academy of Maxillofacial Prosthetics meeting over the weekend I will add a sentence or two to the intro, and I think that I will use Gary's point emphasize the value that is there. After all, many who have fought very tough battles have given much of their time and shared experiences to help others and create those threads, and that is definitely the spirit of the boards.

None of this should be misconstrued to mean that people shouldn't ask all the questions that they have. More than that there have been some drug changes and product changes since the earlier posts. The HPV issue has been elucidated greatly in the last two years. And we have a generous poster here who is very well informed about the virus and the clinical trials that are now going on. That information is changing daily. The main site has been updated with lots of HPV information, but Gail's knowledge about the clinical trials that are ongoing is direct and intimate, and until the results of those trials are published in a year or two we can't put anything up in the main body of the site. There is also the human element. Sometimes it is the compassion with which the message and information is delivered as much as the content that is important. So for as much as Amy feels I don't get it, once again she is taking me to task for something unnecessarily. I do get it. I started this forum.

To all,

I am tooooo new to step in the middle here and I appreciate the education on how to effectively use this site which I will now routinely do a search before I post BUT I will still post unless the search reveals a post that is very current. I, like all of us, hope that new treatments and products are being offered every day. The benefit of reaching 100's with the same or close dx and hearing what their team recommended currently is more valuable (to me) than what was offered and tried 1 year ago. It may be the same but it's worth the effort to confirm.

It also helps my psychic to have the responder wish me well or tell me to hang in there. To me, the psychological part is 50% of the battle to win this war we are thrown into without our permission. The reason I come here is to talk to real people, real time about my real problems.

To the old timers, we newbie's appreciate you passing along your learned wisdom, whether you learn it from experience or from this Board. Hopefully we will carry the torch if you no longer participate. If you continue, as we and future newbie's would prefer, you will always be a valuable source of information.

IMVHO,

Now that the teeth-care thread has been thoroughly hijacked...

Suggestion: a small reorganization of the Forums page.

Remove that button at the top with the checkmark that goes to Archives/FAQs. If you're a newly diagnosed patient or family member, you're not going to notice it -- you're going straight to the forum topics to see where you fit in. Also, on a lot of sites, "Frequently Asked Questions" refers to the mechanics of the site, not to questions that are frequently asked about the topic of the site.

Put the Search function in a far more prominent location, between the recent visitors and the forum topics -- maybe something simple, like this one, found on the site of the Sidney Kimmel Cancer Center in San Diego.

Make the check-off boxes for the forums and the main site, allowing visitors to search either or both. Make the default for the forum search "all open forums" and allow search within specific forums as part of the advanced search function, assuming the software allows it. (Do many people search specifically by forum?)

The software used by the SKCC site mentioned above appears to be available here: www.copernic.com .

Or you could do something simpler, like that found at the top of CNET or on university home pages -- a search button and text box, with check-off boxes or dropdown menus to search specific parts of the site. I expect that Google offers something like this that would also include an advanced search.

Whatever you do (and I know I'm repeating myself), make the search function more prominent and put it right above the forum topics.

Then, either right above or right below your new location for searching, put a new forum topic for archived messages on common subjects -- maybe something like this:

Archives
Answers to our most common questions: How long until taste sensations return after radiation? How can I avoid the side effects of Ethyol (amofostine)? How do I pack the greatest number of calories and nutrients into PEG feedings? etc. etc.

Then set up the FAQs (but don't call it that) not by forum topic (Introduce Yourself, Currently in Treatment, etc.) but by subject matter -- whatever questions keep coming up over and over and over. (This could, of course, require occasional updates, given improvements in treatments, etc.)

This may help cut down on repetitive questions. At least it would make the answers easier to find. But remember that there is, as David points out, great value for newbies (and even for oldies) in being wished well, right now, by those who have been there and done that and gotten through it.

You can also keep the search link where it is, at the top of each page. Visitors reading a post may see something they want to learn more about, so being able to get to the search function needs to be on each page.

And about that type "My profile/Directory/Search/FAQ/Forum home" -- it needs to be bigger -- and edited. Go to the type size used for "Contact us/OCF Homepage" at the bottom of each page. And move the links for "My profile" and "Directory" (and maybe even the renamed "Archives") down to the bottom as well, below the Contact us/OCF Homepage links. The only links that need to be at the top of each page, in larger type, are "Search" and "Forum home" -- and maybe "Archives."

Thank you for the suggestions. But nothing that you have suggested can be done. The forum software is something that we license every year to use. It is running in a cgi bin inside our web site, and is copyrights of another Internet corporation. While we are able to customize the software's colors and graphic images, the rest of the software, like where the links are, how big they are etc. are things that are inherent in the software and which cannot be changed. Now if you would like to send me say 20,000 dollars we could write our own custom software, and deal with any glitches that it develops or updates that it needs as time goes by. And when that message board software became obsolete (which this has, as new Internet protocols have been implemented) we could spend that amount of money AGAIN to rewrite a new program instead of getting one for free like we have 3 times since the forum went up from the company that we get this from.

We CAN add more posts to the frequently asked questions/archive section connected to through the LARGE button at the TOP of the page. (There is also a small separate link for the types of FAQ

By the way to finally get off this diverted topic - the baby tooth brushes are soft and really a good idea. Also, on the Biotene web site they offer for sale an ultra soft tooth brush that is adult size. I tried one of these recently, and really thought it was a great product for those with ultra tender mouths during treatment and mucositis. These brushes are only available on their web site.

David,
I think the point of Brian's post was simple. Don't burn out the people here that do the responding, don't ask a question before you have taken the time to find the answer on your own. If you find an answer and it's a year old, take YOUR time and research it rather then ask members of the board to update you. After you have acquired the knowledge that you can find, THEN have a conversation with members of the board about it. Do you have any idea how many times people come on this board and ask the question "should I get a PEG tube?". That's just one example of the redundant questions that could be answered easily within the search engine.
I believe this is the core of what Brian is trying to express. I also know how frustrating it is for all of us to have a poster come here and SOAK the board with questions while they are in treatment............and then poof, they are gone, never to be heard from again. WE had one guy that posted nonstop and was given TONS and TONS of support, with more than 800 posts in one thread that followed his course of treatment. Everyone was glad to help, don't misunderstand. But since his survivorship, we never hear a word from him. It is only a few posters that are here for the "newbies" and I don't think Brian is asking to much for the newbies to have some consideration for them.

I have just reread my last couple of posts, and while I am not going to rewrite them or change my views, the frustration that I deal with definitely comes through in them. I think the thing that most amazes me about the web site aspect of OCF is that it IS so impactful, with millions of hits per month, (81% from in the US, the balance from 92 different countries around the world last month) bringing it to a number one spot (which cannot be bought) in the world

Wow. One can learn a lot about an organization just by reading the forum. I have been a member about 1 hour so I will try to keep to the thread. Two years ago while getting ready for radiation my dentist made a full plastic form for the floride treatments. I didn't do the radiation then but I am back again (reoccuring) and he tells me now they recommend an anticavity floride rinse which gets better results than the plastic molds. Also thanks for the info on the search engine. I missed that part in looking at the web site but now I will start there before I ask questions. One way I am trying to answer questions on my web site on acupressure is to refer people to FAQ when I know the question has been asked before. If those of you who are frequent responders to questions know a question has been asked before and that there is a detailed response in FAQ you could simply say "see FAQ for detailed information". I can relate to Brians frustration on being a one man show and want to acknowledge him for all the information that is available here. Thanks.