| 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 | Please read the second comment under the story. This is really sad that in the names of ratings that the show would pander to misinformation. As the poster stated how did that work out for Laura Logan on 60 minutes�. http://blogs.plos.org/thepanicvirus...-mongering-with-show-on-the-hpv-vaccine/
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | Without fabricated misinformation, these people would have to actually report actual news... How could they pander to the pearl-clutchers with fact based news?
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Oh dear - 3 steps forward then two steps back. Sadly you can't legislate against stupidity.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I don't follow Katie Couric, like all other celebrities too, but she had cancer herself, I think someone in her family passed as well from cancer, and hear Katie Couric advocates for cancer often, and even had a show on last year on different cancer survivors, including oral cancer, which day I was supposed to be in the studio audience, but the snow canceled our plans, so I don't know what this turn around is all about. It was her husband who died of colon cancer, and the gastrointestinal research at New York Presbyterian Hospital is named in his honor. The TV episode I was referring had Dr. Marshall Posner, a head and neck specialist at Mount Sinai, who deals with HPV was on with an actress whose husband died of oral cancer.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Then she's a dumbass and frankly I have no patience for talk show hosts - they tend to sensationalize for ratings and generally pander to the gullible and uneducated masses. (before someone freaks out over the last comment - I do not mean that people are uneducated in general - I just mean on certain topics they are (if you're a mechanic - what do you know about brain surgery - unless you were forced by circumstances to learn?) Unfortunately, a lot of people believe that what they hear on TV is fact.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | Well since we all agree, please comment on the shows web site today about what a disservice to the issue this is. Do it politely but firmly if you want it to not get cut. I think we need to be a voice against this kind of thing. Misinformation when allowed to prosper, only begets more misinformation. People are dying from our disease and the next generation has an opportunity never available before to side step ever getting an HPV cancer. She is undermining that. As a cancer advocate herself and one of the founding members of Stand Up 2 Cancer, this is really embarrassing. But comments to the show will get seen. State that you ante a cancer survivor, patient so that the comment has more weight than just something coming from the public.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Well, let's at least wait to see the show. Better to be fully informed before blasting away.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | How disappointing, Katie Couric seems to have gone the way of what's good for the ratings. I've seen the story several times about the mother whose daughter died after receiving the vaccine. It's been getting a lot of attention by the anti Vac groups, when she could very well have died from other causes. All those who jump on that bandwagon do not seem interested in doing the research about the success that has occurred in other countries. The anti bad websites are more interested in selling their products than in staying with the truth. They will change parts of a story so as to slant it for their own purposes. Here are some sites that refute their claims: Re Natural News and Mercola links: http://skeptoid.com/episodes/4283re Natural News and Mercola See #1 and #6 Re Sanevax: http://forthesakeofscience.com/2011/09/08/how-shady-can-these-anti-vax-groups-get/Refutes Sanevax position on Gardasil vaccination Re VAERS (Vaccine Adverse Event Reporting System): http://quackwatch.com/search/webglimpse.cgi?ID=1&query=VAERSHow misconceptions about immunizations occur. And OCF has some great links: http://oralcancernews.org/wp/emergence-of-HPV-16-and-sexually-transmiitted-oral-cancer/Sexually transmitted oral cancer Spike in Oral Cancers Puzzles Experts http://oralcancernews.org/wp/spike-in-oral-cancers-puzzles-experts/Spike in Oral Cancers Puzzles Experts http://www.oralcancerfoundation.org/HPV/The oral cancer connection
Last edited by Brian Hill; 12-04-2013 09:50 PM.
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: 4,912 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 | Mathew Herper is one of the most respected medical tech writers out there. This is his column after the Katie Couric Show today http://www.forbes.com/sites/matthew...ouric-stacked-the-deck-against-gardasil/
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: 4,912 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 | And as to putting up anything on Katie's site, don't bother, the comments thread (1000's of them) has brought out all the tinfoil hats anti vaccination people. I must say that after watching the show that I am particularly disappointed in a woman who has been a cancer advocate after her husband died, has been a core part of starting and funding quality organizations related to colon cancer, and is part of the Stand Up 2 Cancer effort that OCF is a strategic partner to. All I can say is that given that history, I feel betrayed right now. She doesn't need a ratings boost. This was a completely unnecessary, self inflicted wound to her credibility as an advocate.
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 | Great article! I posted it on my FB page and expressed my disappointment in her lack of attention to facts. Ms. C. probably does not have a wrecking ball and has to use this way of getting attention and increase ratings.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Than you Brian, well put. They should have had some HPV cancer patients on the show.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "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: 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 | Disappointing and disgusting! 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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | After watching the recording of the show today, it is about what I expected and par for the course. As a TV talk/variety/entertainment show it's primary goal is to bring eyeballs to the show, so liberal strokes of drama and bias are applied as necessary to juice up the topic. After filtering out all the TV fluff, the message of both medical experts was do your research and consult with the doctor, then make your decision. One did state her opinion for the shots while the other was more oblique but clearly implied it was difficult to recommend getting the series due to the "risks". The two stories offered the obligatory balance, one side clearly working the emotional/empathy angle. The fatal flaw for me was comparing a pap smear test, a diagnostic procedure, with a targeted preventative vaccination, destroying any remaining credibility. So what if the show throws the anti vaccine crowd a bone? If you are in that camp then there would be very little to convert any in that crowd anyway. If not, I just hope viewers listened to the common advice to research and seek the doctor's expertise then take a position and decision. But in this day of 5 minute video clips and void of critical thinking, it is sad the majority will likely take away the HPV virus is something to be avoided. Very sad, Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 |
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: 4,912 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 |
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: 4,912 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 |
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 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | All just indicative of the state of our media today. Who cares about facts? Man, you read some of the comments on those article links and you realize that we haven't come very far from the Dark Ages.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | At least some of us do care about the facts. See Joanne Bamberger's column in today's USA today: http://www.usatoday.com/story/opini...ccine-hpv-jenny-mccarthy-column/3884785/
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: 4,912 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 |
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 | What a powerful story in the Dailykos! Love the reference to journalism schools and whether they teach statistics or how to tell evidence from coincidence. Reminds me of a class in Logic I took years ago. How these stories continue to come en masse. Maybe they will serve to pry open the eyes of some of the anti-vax groups.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The syndicated TV show "The Doctors" is broadcasting a segment today (check your local listings for time/station) in which two sisters, ages 19 and 20, are saying that Gardasil caused premature ovarian failure and left them infertile. More details on their claims here (article is from early November).
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 | Great! Let the anti-vaccine ball build even more momentum. This should be a no-brainer to get immunized. Here in the land of choice, and everyone being entitled to their own opinion it saddens me to see this anti-vaccine push for the Guardisil shot.
Oh well, two steps forward and one step back happens with just about everything in life. Charm would be having a stroke over this. 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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Christine, You are right, indeed! Thanks for the smile as I thought about Charm .
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | The entire anti-vaccination movement needs to be viewed for what it is - BS and kooks! And you know there is no sense wasting time trying to have a rational conversation with them, so don't waste any time and energy on them. Keep the focus on educating those that subscribe to a science based approach to medical diagnosis and treatment.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Maybe I'm just a never-give-up type (and sometimes to a fault), but as I see it, those that are advocating the anti-vaccination movement like Mercola, Natural News, Sanevax, VAERS are doing it to promote their own agenda or product sales. They do it by changing or leaving out info to make their own version of "research" what they want it to be and they play on people's emotions, in order to accomplish this. When anyone is advocating something that is downright dangerous to one's health and life, especially any organization or individual that is in it for their own financial gain, or other advantage, they need to be exposed for what they are doing. If enough people or organizations take the time to do this, maybe the blindly following sheep will begin to see that they need to do their own checking. The FDA has ordered Mercola and its coalition members to stop making illegal claims. Others like Quackwatch and Skeptoid have also found it important enough to expose the anti-vax quacks. If they can do it, I can too and I will - every chance I get. I don't want anyone (not even the "kooks") to have to go through what my son did in surviving his oral cancer. I don't want any other mother to have the fear of losing her child or to see him (or her) suffer the unbearable torture that comes with surviving oral cancer.
Last edited by Anne-Marie; 12-09-2013 06:42 PM. Reason: typo
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: 4,912 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 | "All that is necessary for the triumph of evil is that good men do nothing". This has been attributed to Edmund Burke, who actually never said this exact phrase, and has even been rewritten more succinctly as in "Evil only prospers when good men do nothing."
But in our modern world of the Internet, it carries a different meaning than when originally penned 200 years ago. Myth, misinformation, half-truths, outright lies, permeate the online information world. For the most part we all ignore most of nonsense that is out there; but what if someone less informed, less analytical, comes across an answer to an important question that is one of these fabrications?
In some instances, as pointed out by several of the high profile commentators of what occurred on this TV show, there is the potential for people to be hurt, even die. I disagree with Don respectfully. To allow this kind of misinformation to live is dangerous. We all know all to well, in our roles as cancer patients, caregivers, and survivors what the cost of all this might be.
While I agree that you likely cannot change the mind of a fanatic, it is important that the argument for the facts, the truth, be fought. Not necessarily in the comments threads after some article, those are the kinds of no-win situations that do not really change the dynamic. But every opportunity we are afforded to state the risks, to state what we know is backed by scientific evidence, to tell our stories of harm from this virus, of a battle with cancer that had we been vaccinated might not have been fought - we need to keep that quality information out in the world. To do nothing only allows this cancer of misinformation and innuendo to survive and prosper.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Great comments.
[quote]they need to be exposed for what they are doing.[/quote] [quote]To allow this kind of misinformation to live is dangerous.[/quote]
What follows is more from the head rather than the heart.
If the overarching goal is to achieve awareness of the vaccine and convey the positives, then, given limited resources, strategies and tactics to accomplish this goal are defined and executed.
A few guiding principles:
1) limited resources, 2) achieve the greatest progress with the fewest resources, 3) understand success is less than 100% (population of target age) getting the vaccine, 4) existential threats will be defined and resources applied as necessary.
Number one is pretty obvious and especially relevant to specialty causes such as this. Given number one, getting the most progress with limited resources is critical. The common saying, "achieve 80% of the goal with 20% of the resources" means get all the low hanging fruit knowing some at the very top are left behind as too costly to retrieve. Number four means even if one of the fruits at the top of the tree can infect the whole tree and kill it, you must apply whatever resource you can apply to go get that one at the top.
I've not spent any time looking into the variations from this standard model as it applies to promoting and educating a potential lifesaving medical vaccine and certainly there are nuances requiring some adjustment of the basic business model to address this issue. I KNOW Brian thinks about this everyday, so I'd love to hear his take.
I'd love to hammer, stomp out, and totally discredit every false and misleading message just as much as you. But we are in the Internet and hyper mass media age and information flow is so accessible to all, it is impossible to stop all negative messaging.
If the Katie interview was deemed so detrimental to the cause then you may be obligated to address it head on and expend resources, maybe all of it, to go to war.
One would expect companies producing and profiting from the vaccine have more to gain if they can prevent the false messaging creating confusion in the market. The fact interviews like the Katie show go on indicates to me it is a battle they chose not to fight for whatever reason. With a battery of legal force at their disposal, it would not take much to file some action to disrupt the airing of that episode. Why they don't shut this nonsense down forces one to dig deeper. It it would provide a better balance between heart and mind.
Great dialog, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | Katies show, catastrophe that it was, is our first amendment rights in play. Everyone is entitled to have their opinion. So this is less on the mothers that are looking for a reason why something horrible happened that they can blame, and more about someone who has the key to the bully pulpit giving that person a venue to spread misinformation. This is an issue of someone with the opportunity to move the ball down the field in a positive way choosing to do something that moved it backwards. This is a particularly difficult situation for me, as OCF is a proud strategic partner to Stand Up 2 Cancer, and Katie is a founder of that organization. EIF the parent organization behind SU2C is also OCF's largest donor every year, (through the involvement of Gwyneth Paltrow), so in the middle of all this I am walking a razor's edge of being angry, and not biting the hand that feeds me. OCF has a dream team ( HPV) application in front of SU2C, that I have 6 months invested into putting together.
Last edited by Brian Hill; 12-10-2013 05:13 PM.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | So what can we do?
Spreading the word through our friends and family can only do so much.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2011 Posts: 123 |
Jill..CG to Ken, age 43,mom of 1yr old girl. DIAG:12/9/10 SCC BOT T4N0M0 HPV+ START:1/3/11 IMRT dailyX35 and 7 chemo END:2/23/11 PEG IN:1/15/11 Out:4/26/11 CT/MRI 4/25/11-marked improvement CT 6/11 new spots BX 6/23-cancer present Total Glossectomy sched 7/20/11 7/19/11 Ken's suffering ended
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Well, it's nice that she apologized. I hope it's not just a case of doing something dumb because you can always apologize for it later if you get caught.
Merely apologizing is not enough. If your friend lends you his car and you wreck it, "sorry" does not fix the damage, your have to either repair the damage or get him another one.
If it's really critical to her that people know the facts, then she at least try to repair some of the damage she caused by putting knowledgeable people on her show who can set the record straight. Just my two cents.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Brian,
The other side to the 1st Amendment is the responsibility of the recipient of what is being communicated to apply filters based on their own set of knowledge, experience, intuition, culture, values, etc.
I firmly believe the vast majority of people in our culture today accept short sound bites, tweets, email blurbs, etc. as some form of truth and fail to apply sufficient filters and just let this stuff sync into the psyche where it becomes "truth".
It is understandable but not excusable that people do not maintain a stronger filter shield to avoid all the nonsense that gets blown onto the public.
As to Katie Couric specifically, she is a has been and the sinking ship of a show she is on is going under end of season and she is jumping ship to Yahoo, really? Boy, now that is a forward career step if there every was one.
To be fair, what appears to have happened is she wanted to bring harder news stories to the show but the bosses wanted softer and more variety themed stories for that time slot.
As Forest Gump so eloquently put it, "Stupid is as stupid does".
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | I have heard that on Friday she is going to have the head vaccine person from the CDC on her show� Clearly all the partial mea culpas so far have not quelled the rough seas. Let's see if this is a redeeming moment or not. Bottom line the damage is done. The odds that viewers of that bad segment will watch a correcting segment are only so so unless they are everyday viewers. But clearly the pressure to do more has been applied either with or without Katie's input. Please note that they have not put out any publicity about Friday's subject matter or guest.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]Please note that they have not put out any publicity about Friday's subject matter or guest.[/quote]When has the media ever made corrections anywhere else on the last page of the newspaper days or weeks later or put on as the last item in a televised program.
As you say even a full mea culpa will not take back the impressions left on those who watch the first segment. There are going to be those who happen upon the second show and view the retraction, correction, or whatever it may be. Does it balance out, who knows? What if the second segment has greater viewers? Does that mean more people listen to the benefits? Does this overcome the damage done by the first segment, who knows? We all know that the answer is we will never know.
At least there were enough feathers ruffled and hens cackling to force the network to review the topic. Maybe one could interpret this shows there is quite a bit of awareness and support for the vaccine.
Gotta run and set the DVR!
Bye, Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | The only publicity I've seen about today's show did not include any interview with anyone from CDC.
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: Jan 2011 Posts: 123 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2011 Posts: 123 | Maybe now that Katie is back peddling it will actually help with your work that you have in front of SU2C. It shows it is even more important to get correct information out there!
Jill..CG to Ken, age 43,mom of 1yr old girl. DIAG:12/9/10 SCC BOT T4N0M0 HPV+ START:1/3/11 IMRT dailyX35 and 7 chemo END:2/23/11 PEG IN:1/15/11 Out:4/26/11 CT/MRI 4/25/11-marked improvement CT 6/11 new spots BX 6/23-cancer present Total Glossectomy sched 7/20/11 7/19/11 Ken's suffering ended
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The segment, toward the end of the show, was pegged as part of regularly scheduled Friday follow-ups to recent shows that sparked viewer feedback. "Very few shows have generated as much reaction" as the HPV show, Katie said, so "I want to make sure we all understand the facts about this vaccine and the human papillomavirus." Katie spent more than six minutes (an eternity in television time) interviewing Dr. Anne Schuchat, the director of the CDC's National Center for Immunization and Respiratory Diseases, who discussed facts about HPV, and the vaccine, that should have been included in the first program. You can view the Schuchat segment here. Note that the anti-vaccination folks are out in force in the comment thread, and the text below the Schuchat video seems to me to be weighted toward the anti-vax view.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Thanks Leslie,
I forgot to record the program but caught it via your link. As you say, it was far more than a ten second mea culpa and the interview with the head of vaccinations at CDC is about as credible a talking head as there is.
There are over 2,500 comments - I scanned a few, many mis and under informed commenters. There is no hope for those who question the safety and efficacy of drugs that make it through all the trials and finally get FDA approval.
Thanks Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | We do need to continue to spread awareness and information in every way possible - friends, family, social media, awareness walks, sharing OCF info with your dentist or doctor, etc., but in a way that will not offend nor irritate those those who are reluctant to accept new information. They may have been emotionally influenced by a constant barrage of mis-information (a.k.a "brainwashing") and it may take a while for new stuff to sink in. Irritating them will only make them sink deeper into the cesspool of misinformation. You cannot "make" someone do or think something they are incapable or unwilling to do. And some just get confused with facts. So it's better to play nice.
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: 4,912 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 | Reading the trolls comments and ignorance of facts is disheartening. But it really doesn't matter what the conversation is about, the Internet has allow and facilitated not only the spread of good information but a place for those with skewed information, or hidden agendas to also become quite vocal. The screen name allows anyone to hide behind it and that is also part of the problem, people will say things they might not without the anonymity. The other issue is that on the internet the loudest and most persistent voices get the majority of the space, not the most knowledgable or educated ones.
This environment isn't going to change. All we can do is tell our stories, and put out good information in a non pushy way when we have the opportunity. It's a sad observation on the situation, but it is the same in politics or any other subject of controversy. Our fight goes on for science based information that will help people avoid our disease.
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 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | News is out she was dropped by ABC
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | I read that in today's LA Times as well, Brian. Such a shame....
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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