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Joined: Jan 2009
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EricS Offline OP
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Charm, you missed the spirit of my post and from the tone of your post and your insulting way of expressing yourself that doesn't surprise me at all.

In fact I'd just think about changing your handle because if your post is indicative to the amount of "charm" you have you're in real danger of being sued for false advertising.

If you hadn't noticed I'm not selling anything, I'm looking for insight, information and discussion. I've promoted courteous conversation, which from the sound of your post is beyond you. Keep your insults off my topic and a tip for you, when asking for donations in your signature you may get more by not being a jerk.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Come on guys, this is no place for squabbles, this is our place for comfort not tension.One thing I bet none of us believe in is to be some thing you aren't or you don't belive in. All opinions are invaluable . Have a good day and smile.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jan 2009
Posts: 1,844
EricS Offline OP
Patient Advocate (1000+ posts)
OP Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Jim you are awesome and have helped me in so many ways I can't begin to express my gratitude to you. Being new here and looking for acceptance and understanding, I've really appreciated your posts.

Markus, I love reading your insights and intelligent responses, your posts are what I expect from my inquiries.

But I don't expect nor appreciate being called brain damaged and gullible and then told I'm insulting just for a small "funny" statement at the end of my thought. This coming from a veteran on this forum.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
This kind of thing has been discussed here since the very first forum postings almost a decade ago. We have seen tons of animal model ideas that never panned out into the real world in that period of time after an interesting start. People in this thread have said it clearly - we are not mice. Animal models most of the time do not translate to humans 100%.

New posters to the board who haven't been here for the YEARS that Charm, Gary, Mark or I have been posting about these things should read some of the thousands of posts on an idea before they jump on others. Three of us have some scientific background, and we have no reason to squash good ideas or the "spirit" of posters looking for (and needing) medical help now. Believe me since 2000 I have known too many oral cancer patients that are no longer with us. I REALLY wish there was a magic bullet or something on the horizon that would change all this.

The problem is that most of the posters that come here do not understand the ethics of how drugs come to market to PROTECT the American public from drugs, devices, treatments, ideas, etc., that might hurt them. We are not lab rats. The FDA has protocols that are designed to prevent harm for a reason. If trials in animals, or early phase trials in humans do not pan out, the research dies for lack of funding and results. Simple as that. No one is letting the "cure" languish on the sidelines so that the status quo can stay the same. There just is no "news story value" in talking about promising things that didn't work out; so the press releases which are usually put out by researchers looking for additional funding, drug companies pumping their stock through their upcoming product pipeline etc. and created all the hype in the beginning, die, from both a lack of general interest perspective, and a company/researcher benefit. None of these things warrant someone doing a story on why the idea died. Particularly the company or researcher that wrote the first press release. They have nothing to gain to come out with yet another press release telling the public that their idea did not pan out. The scientific community knows because the failure of the idea THAT WAS ORIGINALLY FUNDED BY YOUR TAX DOLLARS, has to be published, not abandoned. But these are not picked up by the general media because that does not serve their purpose.

Invariably someone digs up one of these left over research things from the web (which spiders and catalogs everything ever put up, and goes back forever and a day), and posts about it without looking for, finding, researching, or referencing all other articles explaining why "that something" was necessarily abandoned, and for the reasons stated above, can't find a story about why it died as an idea in the general media. That is usually the case. There was no INITAL problems in the idea, but eventually it did exhibit some, or it had side effects that negated the positive. The idea goes dead.

Now left out in cyber space with no closing comments, it is found by someone who thinks it is a conspiracy to keep everyone paying doctors, hospitals, pharma co's, or whatever, or they just don't have all the information, who puts it on a blog where it gets a new breath of life to start circulating again, even though it is a dead idea.

New issue, particularly for new posters. I'm not excited about the tone that some have taken on this board, particularly new posters that haven't taken the time to read all the many many old posts, where these kinds of abandoned research ideas were gone over ad nauseum. But these same people are quick to point out an issue they have with the attitude of someone who has hundreds of helpful posts to help others. Shooting quick from the hip seldom does anyone justice. We have a enough tension on these boards with death, pain, fear, hopelessness, and more and don't need to add this kind of BS to the mix. That does not belong here. We're all in the same boat. And it's a damn leaking thing to boot. Flaming people on this board is not welcome, statements like someone should get sued for false advertising about their name, are not helpful, and do not move positive ideas forward. If you don't like someone here, don't post to their threads. Put something out there that has holes in it from a research standpoint, and you can count on people to point it out. If that bothers you, that is not the problem of the person that offers the ideas of why something is incorrect, it is in the mind of the reader. This tone stops here. This thread is closed.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Well thank you to those of you for the PM's of anger, and disappointment with my posting and position. Thank you also for being pissed that I closed the thread before you got your two cents worth in. As an administrator, Gary, Mark, or I can close any thread that we feel is getting nasty or drifting off into something not palatable. In retrospect I should have let this one stay open so I could copy and post here what was sent to me. Man has this crowd changed.

OCF can't be everything to everyone. It can't be a free for all. Someone has to draw lines, so therefore it isn't a democracy - though the lines are seldom drawn. To the person who said they wanted to go elsewhere, I wish you well in finding a group of people who are as knowledgeable and giving as the people on this board. And oh yeah... thanks for making my day just so f^&*(+g wonderful that I stayed up till 1AM trying to explain something about how this kind of research gets left behind in the web world in a simple, rational, manner, after spending my entire day in airports coming back from lecturing on oral cancer. Please no posts defending me or attacking me today. Let's let this one go.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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