#82075 10-15-2008 04:55 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | I was flipping channels this morning (Oct. 15) and happened upon the long-awaited "Good Morning America" report on the link between oral cancer and HPV. For those of you in time zones where the show has not yet aired, it's on in the 7:30 half hour (I tuned in around 7:45 and the report appeared to be about two-thirds of the way done). It was followed by a brief discussion between Diane Sawyer and ABC's medical editor, Dr. Tim Johnson. There's also a story on the GMA website, along with a box for comments. No video of the segment yet (it's 8:02 a.m. as I type this) but I am sure that is coming. As of about 9:30 a.m., the video has been posted with the story.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | 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 |
Thanks for the info Leslie. Im sorry I missed it, hope to see it on video.
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: 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 | Thanks for the heads up. I'll wait & see if they post the video later on today or tomorrow.
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 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 |
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 |
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | 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 heard this advertised on TV around 7:00Pm last night. Unfortunately I still can't post from home so had no way to tell anyone. Actually, if I'd been thinking last night I should have emailed Jerry. Oh well.
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
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | The good news is not only did our patient come across well, but ABC actually got the story right. Of course hooking them up with doctor Gilllison at Hopkins ensured that the facts would be right. The only down side was that after all the work I/OCF did to prep them, get them the right people and more over the last 7 months, OCF didn't get a mention as a source for additional info. (Thank you very much.) But bottom line we got an important story out there, with good information, in a way that did not sensationalize the oral sex aspect of the story line.
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 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | I think that I have pretty much lost all faith in the average American. The woman on the McCain town hall meeting that thought Obama was an Arab, and the rest of the political manipulations, misrepresentations that have been believed and restated as gospel, had me convinced that some people should not vote because they are incompetent to make any good decision (Republican or Democrat) or they are one issue voters who have had their buttons pushed by some hot topic, like gay marriage or whatever (that's how we ended up with 4 additional years of a disastrous W administration). Sorry this forum is not supposed to be political. But reading some of the idiots that have posted to the ABC comments after seeing the story or reading the article on HPV and oral cancer, convinces me that far too many Americans are not just ignorant, they are downright stupid and must be from the shallow end of the gene pool. Idiots. Please note these reflect my own opinions and do not represent ideas and positions of OCF.
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 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 |
Wow!!!!! Brian you are absolutely correct about the comments. Not only do those posters have no idea at all about what a serious deadly disease OC is, but they also completely missed the opportunity to actually learn how to idetify if they have a problem. Its actually very sad to know that so many innocent people out there are too stubborn and ignorant to try to understand the information they have been given. It could one day save their lives or someone they love but their thought process completly missed the boat.
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 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Parts of that report have just aired on one of our evening news programs (channel 9) here in Australia. Hopefully some of the other main channels will also cover it.
Sadly oral cancer awareness in this country is just about non existent it gets very little coverage in the media.
Karen
Last edited by Karen Rose; 10-15-2008 11:28 PM.
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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