| Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I know Brian will have this covered somewhere but thought I would post it here. http://abcnews.go.com/Health/Reprod...ral-sex-popular-spread/story?id=11916068
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | This TV show segment was aired quite some time ago, OCF helped assembled information, contacts, and more for it. After all that, we didn't even get a mention, and they didn't tell the story correctly. At least the story got told on the early morning TV segment, and while it has some inaccuracies, it does get oral cancer and HPV out in the world again. While this has been out there awhile, I am always amazed at how stupid the general pubic that posts comments can be. Not just their lack of general intelligence, but the amount of misinformation and bias that they live their lives believing. It's particularly sad.
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: 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 | I am speechless! I don't know what is worse - the sensationalisation of the issue (and subsequent sweeping statements masquerading as truth) or the dangerous ignorance of those who commented. I actually felt sick reading the article and then the comments.
The danger of linking oral cancer to oral sex was always going to be the stigmatisation of the disease and this level of ignorance is not helpful.
I think it is good the OCF was not linked to this heap of garbage
Karen
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: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | You took the words right out of my mouth Karen!
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Yeah I started reading some of those comments and began to get my dander up, was seriously considering replying from the perspective of someone who's actually been through an HPV-caused cancer... but there's no point. Idiots who post shit like that aren't interested in facts. D2
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: 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 | The people that posts those comments are "professional" responders. They like to see what they have to say in print. Ignore them for they know not what they do. JMO
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: Jul 2010 Posts: 95 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2010 Posts: 95 | I attended a symposium on head and neck cancer in Johns Hopkins Medical Center on October 16. It was entitled � Update on HPV-Associated Head and Neck Cancer.� To read about the information presented please visit my Blog: http://dribrook.blogspot.com/I Brook MD | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Hey Doc Since you have only posted three times (each with a link to your web site){not that's there's anything wrong with that as Seinfield used to say}, you probably did not realize that the info on HPV on your blog is very old information to OCF readers. It is encouraging however that your fellow medical professionals are waking up. I was amazed at some synchronicity when I read your book on line because my worst sore throat before they discovered I had Stage IV base of tongue cancer came when my wife & I were visiting Turkey for the first time. God, I loved Byzantium. And your ancedotes about residents not cleaning trach tubes sounded like you had been in the next bed to me because I went thru all that too. I pleaded with my wife and son to bring me my dad's billy club so I could whack those smart ass residents and phantom nurses but they wouldn't. I hope you become a regular contributor as we don't really have many "larys" posting here. I suggest you use the search function here and see how OCF has covered similar issues to those of your web site. Finally you really need to update your Ebook to refer people to OCF. Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2010 Posts: 95 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2010 Posts: 95 | I hope that otolaryngologists and other health care providers would read my book so that they can learn how a patient feels and experience major surgery and loss their ability to speak. Receiving empathetic and supportive care by the medical staff was extremely important to me. Surgeons can be impatient, rushing, and in a hurry to finish rounds, especially when they have surgeries scheduled. Physicians need to realize how helpless and dependant their post surgical mute laryngectomees are. They require more patience and time to communicate their thoughts, questions and concerns. Their inability to speak is a very stressful and unfamiliar reality and requires patience and support, particularly from the medical team. Patients should be encouraged and allowed to fully express their feelings and concerns. This may be a slow and tedious process as they often need to communicate by writing. The emotional well being of the patient is a very important element of the post surgical care and ultimate recovery and adaptation to a life as a laryngectomee. I also noted that my surgeons rarely examined any part of my body except for the surgical sites. Medical protocol has always required that a patient must be seen and treated as a whole � not as a body system. This is especially important with elderly post surgical patients who may have other medical problems. I wrote several articles in the medical literature to educate and inform physicians about these issues. To those interested they can get one of the recent one through this URL: http://www.freewebs.com/dribrook/Cancer.my%20exper.SurgOncol.09.proofs.pdf These issues are also discussed in my book My Voice on Chapter 16. The book can be read (and obtained) on my Blog:http://dribrook.blogspot.com/ I Brook MD | | |
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