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#5895 08-07-2005 09:32 AM
Joined: Mar 2002
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OCF Founder
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OCF Founder
Patient Advocate (old timer, 2000 posts)

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Rather than answer all the people individually that have written me in the last month about my seeming disappearance from the boards, (and those postings of mine that ramble on and on), I thought I would briefly tell everyone what is taking me away from the boards so much. OCF is, as many of you know, much more than this web site. I wish I could say we are a huge group of people fighting for all of you, but it is at this time essentially just me tilting at windmills, or sometimes I feel spitting into the wind. In the last couple of months, some of the things that have taken me away are the following:

I met with the powers that be at the ADA in Chicago. I am trying to get them to do several things. One is get their population of 100,000 dentists off their rear ends and do more screenings, if for no other reason than it is going to protect them from getting those collective asses sued for failure to diagnose, or failure to meet standards of care. This year I have testified in two legal suits against doctors who watched and waited till it was way too late, and I am in the docket to do another case this summer. (Hell hath no fury like an oral cancer survivor who had his cancer missed by his doctors.) While this is not a vendetta, it is important work. Unfortunately all the cases so far have settled out of court with permanent gag orders on them, and I haven't been able to use the cases as examples to take to the dental community. The insurance companies know they cannot win these suits, and they ALWAYS want them out of the public eye as part of the settlement. Remember that the ADA's charter is to take care of their members, not the public, (though their PR machine would have you believe otherwise) and as that type of professional society, they have their own agenda. But they can drive many things in their own self-interest that would help, and the other issue that I am pushing them towards is mandatory oral cancer CE (continuing education credits which every doctor has to have each year to keep their license) education at the state licensing board level. I have spent much time lobbying state boards, (very time consuming) but a real push by the ADA would make the difference in all these individual entities desire to act. The last time that we had mandatory CE courses here in CA for instance, was at the beginning of the AIDS crisis when blood borne issues were important in dental offices - where at the time rubber gloves were not used everywhere, and not every office had switched completely from cold sterilization to autoclaves. This is an ongoing battle with an organization (the ADA) that surprisingly has a very poor history of being involved in oral cancer. After three years of my irritating them and threatening to take the story out in a public venue, that is changing. But it is slow. Getting them to sponsor any kind of national initiative that costs money is out of the question for these guys. Leadership for that will have to come from elsewhere


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.
#5896 08-07-2005 09:52 AM
Joined: May 2003
Posts: 928
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2003
Posts: 928
Brian
I don`t quite know what to say , I am in awe of your spirit and dedication.
I know you just tried to gloss over it, but , you were back at MDACC? Is everything OK?
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#5897 08-07-2005 09:55 AM
Joined: Jun 2005
Posts: 349
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Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
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Brian:

Each and every one of us is lucky to have you on our side, and in our lives...

Keep up the fight... You are appreciated more than you know!!!!!!

PS: I know you said the Anderson stuff is not important, but all is ok, right?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#5898 08-07-2005 10:05 AM
Joined: Sep 2003
Posts: 1,244
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Sep 2003
Posts: 1,244
Brian
We all know you are with us in 'spirit' OK that's twice you have shrugged off concerns about YOU.
Will not do my friend we need to know....
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#5899 08-07-2005 11:52 AM
Joined: Apr 2005
Posts: 68
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2005
Posts: 68
Brian
Your dedication is beyond words. Thank you for all that you do!!


Mucoepidermoid carcinoma-intermediate grade. Removed 3/05. Additional surgery to get clean margins and selective neck dissection 4/05. 30 lymph nodes removed. All clear!!
#5900 08-07-2005 12:15 PM
Joined: May 2005
Posts: 497
"Above & Beyond" Member (300+ posts)
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Joined: May 2005
Posts: 497
......and then there were giants......


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
#5901 08-07-2005 12:47 PM
Joined: Mar 2002
Posts: 4,918
Likes: 67
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,918
Likes: 67
You can all quit asking about my health....I'll be around to cause trouble for some time to come. I appreciate all the kind comments, now pls stop. I just wanted a quick way to answer the question I have been getting so often lately. The mutual respect we have for each other is a given.. and need not be stated.


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.
#5902 08-07-2005 01:43 PM
Joined: Jun 2002
Posts: 206
Platinum Member (200+ posts)
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Posts: 206
Hi Brian, Bravo.
Cathy


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
#5903 08-07-2005 01:47 PM
Joined: Jun 2002
Posts: 206
Platinum Member (200+ posts)
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Platinum Member (200+ posts)

Joined: Jun 2002
Posts: 206
Hi Brian, Passed your EMail to an executive at a nationwide tech school that has a medical component and is training dental techs. Possible site of oral cancer screening and publicity. No promises but we will give it a try for you.
Cathy


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
#5904 08-07-2005 02:49 PM
Joined: Apr 2005
Posts: 2,676
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Brian, isn't there a way to teach one of us to receive and process shirt orders, etc. and mail them out? Remember two things [1] delegation is an art form [2] it is possible to wear yourself out. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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