#50199 04-06-2007 05:20 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | 1st for any parent out there who thinks that there isnt already an amazing # of promiscious teens they are crazy...I worked for planned parenthood..these teens have no shame and def more then one parter...They dont care and disease dosent scare them. I agree vacainating them isnt giving consent for sex...there are soooooo many "KIDS" with cervical cancer it isnt funny .....Lord knows how many will come down with oral cancer ..i can honestly state we had 1-2 bad paps a week on under 18
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#50200 04-07-2007 01:43 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Ginny,
Thank you for your encouragement and kind words but I don't hold a candle to Brian's effort or knowledge.
FYI, I saw the Garasil commercial last night. Why did you think it was pulled?
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.
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#50201 04-07-2007 01:08 PM | 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 | It has not been pulled. I talked with them early in the development of this plan, and it was decided that the first phase of the effort shouldn't even talk about the vaccine since Americans didn't know that a virus could cause a cancer. (Even though this has been common knowledge about cervical cancer since the forties. So the first phase of marketing/advertising was just a bunch of women on the screen saying "a virus can cause cancer...I didn't know that". Once that had played for almost four months part two was to talk about how a vaccine could stop the virus. So the first ads were curtailed and the second ones began. In my meeting with them originally I asked them - when you are standing in a mall in front of the map of the mall with all the stores on it, what is the most important part of the map? No one in the room got the answer right. The most important part of the map is not the name of the store you are looking for - it is the little dot that says, "You are here" without that, the map is useless. Same thing when you are marketing a vaccine that battles a virus. You have to define first why the virus is a bad thing and, then you can add to the storyline. Your first job in any endeavor is to define reality for yourself and for the marketplace that you are approaching. I did this for 30 years
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. | | |
#50202 04-08-2007 03:46 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Brian and Everyone, I have already started to make contacts about "the story" and I hope I can get an ear from someone. I have contacts with our local newspapers and local TV affiliates (tax clients actually) and I'm putting the pressure on as we speak. My clients wouldn't be the ones to handle the story so I need to go through them to get to whomever. My wife wants me to write an Editoral but that will be my very last resort. The writer of the article about me (or Buttercup ?) wants to only focus on men and the HPV connection not this story line so he may also make a referral. My goal is to get this exposed nationally somehow but I know I have to generate the local interest first or be a movie star or pro athlete. I don't understand why but being a CPA just doesn't make that cut & I'm too old to make a career change.
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.
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#50203 04-08-2007 05:01 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | There's an article in the Outlook section (week-in-review/opinion section) of today's Washington Post about this very topic. The decision whether to get vaccinated for HPV was also featured in last week's Health section in the Post. And David -- you could take your list of facts and, with a little tweaking, submit that as an op-ed to your local paper (St. Pete Times? Tampa Tribune?). The fact that you were invited to testify before a committee of the legislature gives you standing to write about the issue. You could do a short introduction to the list, giving a brief synopsis of your story and noting that your oral cancer was HPV+. Throw in the statistics Brian has cited about the percentage of tobacco users (the typical risk factor) declining while the percentage of oral cancer cases is rising -- particularly among younger people who have never smoked. Then list your facts as bullet points, one by one, with a short closing paragraph summarizing the issue. You could peg the submission (and even mention it in the introduction) to the forthcoming National Oral Cancer Awareness Week that others have talked about on these boards. -- Leslie
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.
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#50204 04-10-2007 05:00 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | In today's Health section of the Washington Post, our own Gail Mac responded to last week's article about whether to get vaccinated for HPV (mentioned in my post above) in a terrific letter to the editor that begins: Lost in the discussion of human papillomavirus and cancer is that high-risk HPV strains are also responsible for an increasing percentage of new cases of head and neck cancer.She cites the research done at Johns Hopkins into HPV-related oral cancers and notes that her husband's cancer was HPV+. Unfortunately, the letter is not currently available online; I'll keep checking to see if it gets put up. -- Leslie
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.
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#50205 04-10-2007 11:03 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | For some reason, the Letters to the Editor in the Health section of today's Post are longer in the edition I got at home in northern Virginia than they are in the edition distributed in DC. My paper at home includes Gail's letter; my paper at work doesn't -- and that's the edition that's picked up by the website.
Brian, if you like I'll send you the page with the letter for your files. Let me know.
-- Leslie
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.
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#50206 04-10-2007 12:00 PM | 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 | please do. I would like to have a copy. And kudos to Gail... efforts here and in the world to spread correct and useful information about our disease, our organization, our experiences, will be the turning points of oral cancers demise as a major killer.
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. | | |
#50207 04-25-2007 11:39 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Why am I not surprised by what happened yesterday in Texas? See; http://www.nytimes.com/2007/04/26/us/26texas.html?_r=1&th&emc=th&oref=slogin I was particularly upset by 2 statements quoted in the article.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#50208 04-26-2007 03:03 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jerry,
I think the Senate in Tx reacted in 2 ways; 1. They wanted to send a meesage to the Gov saying next time consult us first and 2. The Republicans wanted to demonstrate their control. Up to this point as a Rep I would have voted for Mickey Mouse if he ran on the Rep ticket. I am quickly reevaluating my options. I am forwarding this article to many. Thanks for the site.
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.
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