| | Joined: Mar 2010 Posts: 30 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2010 Posts: 30 | The Dr Oz show is looking for a women to share her story and help spread awareness about this important message. If you are interested in sharing your story please respond to [email protected] as soon as possible with the following information Name, Age Recent Photo Phone Number Email Address City, State where you live A few sentence about your story (What were your warning signs, treatments, how your health is today). Or you can write into their website using this link. http://www.doctoroz.com/plugger?tid=8853 | | | | | 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 | ***UPDATE**** The Dr Oz show is looking for female oral cancer survivors who are HPV+. They are looking for someone between the ages of 30-50ish, hopefully from the Northeast or the NY area. If someone on OCF knows of a person who fits this bill please contact Michelle ASAP! They are planning on shooting next week so time is running out on OCF being able to be a part of this important show.
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: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Well, I gave it a shot but I am on the wrong coast! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
| | | | | 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 | Kris, send them your info anyway.
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 | The last two times that his show did an oral cancer related story, they did not do a very good job with the facts. It was disappointing. He had a general dentist who didn't even know all the risk factors for the disease, on with him. I think a personal friend. This time we offered to do what we did for Good Morning America, find a patient, find an expert, write a good list of questions for them to ask, and gave them a backgrounder document that had everything they needed to know. They did a really good job telling the HPV/OC story, but they were more than willing to work with OCF to make it come together correctly. There was no mention of OCF and we didn't ask for one, we just wanted an opportunity to get the story out right. GMA did a great job. The people at doctor Oz have done the exact opposite, they don't want us to help them or even fact check what they are going to say. We don't want to write the show for them, we just want them to get their facts right. Given the shows track record with the OC facts this is disappointing. OCF fact checks for the NY Times, the Wall St. Journal and others. The only reason that the show came to us with the request is the HIPPA laws in the US make it impossible for them to find, through institutions or doctors, patients or survivors to be on the show. OCF contacts are the only means for them to find someone and not have a legal conflict of interest with patient privacy. So we're playing the role we've been asked to play, but disappointed and concerned that they apparently think they know what the whole story is�.. given their track record we need to cross our fingers. At least the disease is getting on the air, and that is a big positive. And anyone that has been on these boards is more informed than many dentists about the HPV and oral cancer issue, so I am confident that given the chance, the patient/survivor they choose will get it right.
Last edited by Brian Hill; 05-18-2011 08:59 PM. Reason: spelling
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Brian--Melissa was contacted this morning by them, she should be hearing back soon today if she was selected! I put a email in but don;'t have my HPV status and I don't live on the east coast!LOL
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Melissa was selected and will be appearing on the show!!!
She is very excited and so glad she will be representing OCF!!
I am sure she will keep us posted on details
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 |
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Just make sure Melissa is well briefed and rehearsed with the facts so she can weave them into her own commentary. Hopefully this will assist in getting the right messages across.
The hidden agenda is always something to consider and prepare for.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | 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 | Ive chatted with Melissa several times and given her tons of info to absorb. She has joined the forum and has spent some time reading and learning. She sent me a note of FB letting me know how she did.... from Melissa--- So everything went great, I don't feel like I came across as life saving though, I hope I represented but as far as what I could see I just told my story, let me know when you see it!!!
I will find out ASAP, I think they said they would put it on the website, I am going to check Monday to see when. I did do my best but I wish I had a chance to speak more about oral cancers his focus was on HPV and oral sex.
A big thanks to Melissa for doing her best to get the word out!!!
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | The oral sex and HPV link was the hidden agenda I suspected. I thought it odd that they wanted to do a show on oral cancer and then specifically asked for women (ok Dr Oz's demographic is women) with HPV +ve OC (hmmm ....). I am sure that Melissa did a brilliant job and look forward to maybe seeing someone post a link to the video so those of us who live on our heads can see it.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | 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 | We heard from the show today. The segments on Oral Cancer will air on Wednesday, June 8th. I have no idea how well they will put out the information, they did not want anything from any of our advisory board doctors (a who's who of OC experts in the US) to vet their information.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Just saw a short news report on our local Knoxville, TN ABC station about the HPV connection and oral sex causing throat cancer in men and how fast the incidence of this cancer was growing. They interviewed a Dr. Eric Genden from Mt. Sinai Hospital. I thought it was pretty good altho' very short. Wish they had mentioned OCF. We'll see what Dr. Oz does with this next Wednesday.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | Tomorrow a paper is going to be presented at the ASCO meeting which looks at the next 5 years of oral cancer and HPV. OCF was one of the financial sponsors of the work which was done in collaboration with Maura Gillison MD and the NCI. I will post the numbers here tomorrow (the information is embargoed until the presentation) but suffice it to say things are going to get worse in the incidence rate by a large number.
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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