| Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | The information, contacts and story were taken over from the 20/20 producer by the producer of GMA, and they ran with the story that they wanted to do. OCF is not part of that story even though I put together all the people for it for them when it was part of ABC 20/20 (GMA is also part of ABC). Your name was on the list, but at the end of the day, they only picked two doctors and one survivor. My guess is that it will not be a very long story, perhaps 3-4 minutes, and with no interaction with these producers, who knows what the story will end up being after they cut it together. They have hours of interviews for a 4 minute piece.
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) | OP Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | That's show biz. It's really a shame that it got chopped so much. Just watched the show (Stand up 2 Cancer) and thought it was well done. It was quite a production, with no commercials. I was astounded by Sidney Kimmel's 25 million dollar donation. I'm sure that they have and will raise a ton of money for research. Hopefully this research will lead to cures for many types of cancer. Their website is www.standup2cancer.org.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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That was in my opinion well done except they never mention us OC survivors. It would be nice to see one of ours on the next one and let people know 1st hand what we have to go thru with loss of tongue and neck dissections ' rads & chemo and the balance of our lives. Some of us would be hard to understand , but that's a part of the torture we go thru. It's good that I know what I am saying at times and feel bad for those listening.
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | There was someone on the show who had had oral cancer. One of the celebs I thought. I remember him pulling a modified denture / prosthesis out of his mouth. It was brief, but I think it was there.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Brian: What shall I wear to the party in NYC???
Donna
Last edited by Pandora99; 09-05-2008 08:21 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I thought it was very well done. There was an oral cancer survivor on there who was a singer and took out his prostesis. Oral cancer wasnt mentioned as werent alot of cancers. The show could have been much longer to give more important info for screenings. It showed breast check ups, colonostophy, and the turn your head and cough exam.
All the celebrities donated their appearances. From what I understand all the money raised will go directly towards cancer research. Sidney Kimmel gave 25 million, hope others who are well off follow his footsteps and give large amounts too. Maybe Im too optimistic but it would be so wonderful to see a cure in my lifetime. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | Pandora.... just wear your check book.
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: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | A cheque book you mean?? Damn - I was planning on showing up in just a smile!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | I was impressed by the generous donation from Kimmel, of course the Johns Hopkins cancer center is named for that family so if you are not aware they are long time benevolent sponsors of big name medical enterprises. There have been billions of dollars (with a b) donated to cancer research in just the last couple of decades, let alone the money that has been spent by the NIH (our tax dollars) towards cancer research. Koman alone has raised between 600 million and a billion all alone during its lifetime. I mention all this to giev you some idea of how complex the problem/idea is. Billions of dollars and decades of research and it still kills someone every minute of eery day.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Also there is Sidney Kimmel Cancer Center here in San Diego. Although the main campus is strictly a research center, the Cancer Center where I was treated at is an affiliated center.
I believe John Hopkins Cancer Center is also named after Sidney Kimmel.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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