| | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Hah! I'm not so crazy, after all. Murph from Motley Fool actually wrote a review! I'm flabbergasted! I don't even contribute to their forums regularly, so he has no idea who I even am, but he still wrote a review!!! C'mon people, we really can do it. Including myself, that makes a total of 5 reviews I've gotten. Please, if I can get a review from a stranger, you guys can do it, too.  rosie http://greatnonprofits.org/reviews/profile2/the-oral-cancer-foundation1
Last edited by rosie; 07-31-2009 06:04 AM. Reason: add link
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 114 |
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Okay, even though it is now August here in Eastern Standard Time, the polls are still open for two and a half hours more since the contest runs on Pacific Standard Time. so you night owls (EST) or evening posters (PST), please vote now. Oh yeah, Mountain and Central Time zone votes are welcome too We are tied for last place in our category - Guests who are not registered are welcome to vote. Heck, even the "spiders" are invited ;)Just click here: Midnight votes Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | It's like election night jitters. Only THIRTY MINUTES LEFT
current scores: we are now SECOND by a thread. Keep voting.
Best of West/Pacific
WESPARK CANCER SUPPORT CENTER
Sherman Oaks, CA
212 Reviews
THE ORAL CANCER FOUNDATION
Newport Beach, CA
187 Reviews
PEDIATRIC CANCER RESEARCH...
Irvine, CA
185 Reviews
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | T'S OVER BUT THE SHOUTING (HENCE THE CAPS) OCF PLACED SECOND FOR BEST OF THE WEST. YET WITH 188 VOTES WE HAVE MORE VOTES THAN ANY OF ALL THE OTHER GROUPS IN THE OTHER FIVE AREAS OF THE COUNTRY. Okay, normal tone: Thanks to all who helped.
You will note that my wife entered the last and final vote for OCF under her screen name of Zinniabee. Family effort.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | You can quit voting now. while two people posted reviews after my wife's last valid vote for the contest review, they are clearly dated August 1, 2009 so they do not count according to the rules. thanks for the thought though.
I see the Great non profit site though has an automatic counter and lists the 190 but I think that won't matter anymore than their typo having July 30 as the cut off that Rosie noticed. Somewhat sobering that we could only muster 3% of our members to vote, while 97% chose not to participate. Do we really have only about 200 active members? That would explain a lot of the fund raising issues,
charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 68 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 68 | Please don't stop posting!! Charm, (and all of the rest of you that pushed and worked so hard for this) I think people that continue to post will do a good thing for the future of OCF, and I hope that those motivated to do so after being in touch with us will say so in a public forum like GNP. A year from now, some of the big gun non profits will have driven many many more people to comment on them, and all this influences potential philanthropic individuals or organizations. The contest was one thing, now we look to the future impact of positive posts
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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | AGREED Now that my competitive blood lust has waned, of course I encourage future postings, even if this contest is over. Our scores ended up very respectable, so thanks to everyone who rallied to "fix" them.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | To me these numbers and rankings don't mean a thing. What truly matters is that 100% of the people that come to this site are helped in huge ways and I'm sure there is no other site, non profit or not that can ever boast that success rate.
To me knowing that as many as 5900 previous posters were helped so much by this site that they never needed to access it again is a testament in of itself.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I think we got a reasonable response from the people who are actively posting BUT since Megan mass emailed the 6000 or so people that have ever signed onto this board, I think the response was rather poor. I'd guess a good 1000 to 2000 of those people were very active at one time and I would have thought more of them would have stepped up to the plate. They can't all be on vacation or changed their email address.
That said, thanks to all who did respond and as was pointed out, we did get a message about oral cancer to people who don't know anything about it even if we didn't win.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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