#69498 02-07-2008 08:33 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | It is getting close to the time for our NYC oral cancer walk and free screening event again in April. I am putting this up early so those in the area can save the date. This year besides all the students and doctors from NYU, Columbia etc. we will be having cast members from the long running TV show As the World Turns come out as a team to walk with us, sign autographs,etc. One of the show's long term regular actors, oral cancer survivor Colleen Zenk Pinter will be there as well. This is one great lady. I encourage anyone within driving distance of the event to come down. I will make it this year, and I would love to meet you as well as share the day with you all. Prizes for those with the greatest number of sponsors and the two largest donation collectors via sponsorships. The first year Barbara Boland won a free round trip ticket to anywhere Jet Blue flies... last year IPOD's were given away, this year... something special from OCF besides the door prizes from NYU. But it's really about getting the word out to the public, doing the free screenings to help people, and the camaraderie of those of us that are survivors. Info here: http://www.oralcancerfoundation.org/events/current_events.htm
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: 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 | Shame it could coincide with the 20/20 piece.
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | These things are planed years in advance. Please see the bottom of the events page for 2009 and 2010 dates. On the other hand, when the media decides it FINALLY wants to do something after months of pitching the ideas to them, it all has to happen immediately. That is the nature of TV, radio, and to some extent event print. Our NYU event has been in planning since last summer.... The new twist is Colleen and ATWT being there to help us.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Brian,
You know I will be there this year again and I am looking forward to finally hooking up with you. Meeting Colleen and other members of the cast, will certainly add to the excitement and hopefully help to get more publicity for the event.
As I did last year, I will contact the powers to be at the American Dental Association and try to get as good, if not better coverage from them.
Thanks to the generous support of my family, friends, colleagues and OCF members, I have been listening to the IPod that I received last year. I hope that I can raise even more money this year.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Thanks Jerry, You know I've been thinking.... you have turned in to a world class OC advocate, you raise money for OCF, you help people on the forum, you are the perfect example of what general dentists should be and how they should conduct themselves. You have become all this after having oral cancer yourself. I am having problems getting general dentists on the screening bandwagon for the last 6 years. Does the logic follow that I should wish for all general dentists get oral cancer..... Nah, that must be flawed thinking.... Let's see, A plus B results in C, which results in.....
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Dang--that is right after I get back from a conference and I'm going to be scrambling to catch up on grading (students have research papers I will need to hand back that Monday). That date is just one day away from my three year anniversary of the start of chemo and rad and I would love to come and meet you, though. I'll have to see if there's anyway I can swing it.
Any recommendations for cheap hotels in the area? For me it is a five hour drive one way so I'd want to spend the night either before or after I think.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Cheap hotels in NYC.... man I bet that is a short list. I'll see if I can get someone from NYU to post here some possible selections, but I would right off the bat check hotels.com or travelocity.com
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I would appreciate anything someone from NYU knows about and I'll do some looking on the bargain hotel internet sites. My husband and I have gotten some pretty good deals on a hotel room in Manhattan on weekdays but I'm afraid a weekend will be another whole thing.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Brian,
Besides Larry and me, I don't know of any other dentists that had OC. When I contacted the ADA almost 3 years ago, I was told by their PR person that I was the only OC survivior dentist that ever contacted him in his 15 years of working there.
Your logic is correct and I can say in all honesty, that I had never heard of the OCF before my treatment started. You can be sure that I have already told 100's of dentists already and will continue to do so for many years to come. Getting them here, is like pulling teeth.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Jerry,
funny on several levels!!
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Nelie,
Some of the hotels in NYC used to have great weekend packages, Fri/Sat nights with breakfast on Sunday. If you plan to spend both nights, you might look into that. We haven't done it in several years and were staying in fancy places so I can't recommend anything specific. Also weekends were cheaper than weekdays because of business travelers. If you find a good deal, post it.
Take care,
Eileen
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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