| | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | I know that many of our here do not subscribe to the free OCF oral cancer news feed, but you really should. It is a resource of science articles, human interest stories, and more about oral cancer, and is updated 3-4 times a week. It doesn't put stuff in your email box, but you go to it when you want to to see the latest that you haven't read by title. One of the most current stories on there is about the HPV issue and the medical community is now doing what the FDA will not. Telling people more and more that they need to get their kids vaccinated with the cervical cancer vaccine - even if they are boys, and even if they are not worried about cervical cancer, because of all the other cancers the HPV16 causes. This is a HUGE thing to be taking place. The manufacturers are not allowed to talk about this vaccine and oral or head and neck cancers, and the public just is not aware of the danger. FINALLY, with all of OCF's talking about it, and more, it is getting some traction in the media. This is the first real progress we have made at preventing any cancer. It is a monumental achievement. The article shows how slowly this is being adopted though, because of lack of knowledge or misinformation. http://oralcancernews.org/wp/category/oral_cancer_news/
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 2009 Posts: 14 Member | | Member
Joined: Sep 2009 Posts: 14 | Brian, Again...Great job getting the word out. HPV positives are so common to this illness. A family member medical professional works in the department where they do the PEGs locally here and she says the incidence of 50(+/-) year old males coming in for a PEG has increased 10-fold over the past year and a half. Girls and Boys need to be vaccinated.
SCC left tonsil dx 8/15/09. finished 7 weeks chemo and rad. on 11/20/09. PEG tube 9/18/09 to 4/17/10. HPV 16+; non-smoker. CT Scan and F/up PET on 4/5/11 showed positive mass in R. Lung. Surgically removed and biopsy negative 5/16/11.
| | | | | 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 | Very good article. It was written so that even a person who never heard of HPV could understand it. I liked how it was factual and did not stray at all into the false info that we see far too often about HPV. This is a huge breakthru!!! Thanks Brian for everything you do and helping people understand the connection between oral cancer and HPV.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have been hearing much more about OC in the news and on different medical shows on TV. Even the Drs Show that is on in the mornings from 9 - 10 has talked about it lately. They tell everything as it is. Keep up the great work Brian .
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
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