#69348 02-05-2008 06:25 PM | 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 | In the next 24 hours I need to get an email from anyone that is/was a oral cancer patient with no history of tobacco use. Please indicate if you were tested for HPV at the time of biopsy or tumor surgery, or if your "assumption" is that you had an HPV related cancer because you had none of the historic risk factors. If you came to your disease via tobacco, the show can't use you. (I have another opportunity still in progress/talks with a different show for that story) I need phone number contacts, and one paragraph about your experience, and current status (In treatment, in remission, newly diagnosed, etc.) I am going to forward your emails to the producer at 20/20 for a show that will be done in the next 30 days. He will call everyone and decide who he would like to have appear on the show. It will explore in the story, viruses, transmission mechanisms like oral sex, and will include Dr. Gillison as one of the personalities. Your 15 minutes of fame, and the opportunity to help the oral cancer cause await you!!!
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Brian, I smoked for about 10 years andn then did not smoke at all for 37 years before my cancer was discovered. My doctor wants to believe that smoking caused my SCC, since he felt that smoking as the cause offered a better prognosis than a genetic cause.
Should I write? I am sort of a mixed case, I guess, since I DID smoke at one time. Perhaps a clarification on this: If a person EVER smoked, will that be interpreted as the cause of their OC?
Last edited by August; 02-05-2008 07:11 PM.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | 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 | a decade of smoking takes you out of the group, thanks for offering, but they want never smokers... Smoking has health issues that exist decades after cessation.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'll be watching for the smokers turn, after the many years of smoking I did until this OC kicked my butt. I was very much a ladies man too, Neither are to be bragged about but put in bad memories.
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
| | | | | 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 | Brian, I smoked in high school for about 5 years. I was a light smoker, about a pack a week and I tested positive for HPV 16 42 years later.
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 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Briain,
I assume you have contacted GailMac for this. I don't think her husband was also a smoker.
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 2006 Posts: 99 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Mar 2006 Posts: 99 | My husband Stephen has never smoked and was HPV 16 positive. Let us know if we can contribute in any way. Kerry Sorry I will write it in a paragraph I didnt read it very carefully....to follow
Last edited by stephenm; 02-06-2008 12:34 PM.
Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
| | | | | Joined: Mar 2006 Posts: 99 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Mar 2006 Posts: 99 | Brian, My husband Stephen was 47 when he was diagnosed, exactly two years ago February 28th, with Stage 4 tongue cancer. He has never smoked and drinks very little alcohol. His Doctor told us that he had a virus calles HPV 16 that caused his cancer. We had no idea what this was were a little shocked after doing some searching online about what this exactly meant. He lived through a year of hell with his family and friends by his side and has been in remission for what will be two years in May. To this day he has a hard time swallowing and his eating is very limited. He will also suffer with no saliva for the rest of his life, but we are just glad he is alive. Thank-you Kerry Martin 978-668-5555 [email protected]
Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
| | | | | Joined: Oct 2007 Posts: 11 Member | | Member
Joined: Oct 2007 Posts: 11 | Hi Brian, I was diagnosed with tongue cancer in 7-07.( T1 NOMO). I had surgery and no other treatment so far. Im 38 years old with no history of tabacco or alcohol use. The doctors do suspect that I have HPV and currently will get a test to confirm. Thanks Glenn Hartenstein 251-621-0739
GJH
| | | | | Joined: Jul 2007 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Brian, I did smoke some in college (usually not cigarettes)but that was over 30 years ago. I don't know if I have the HPV virus and when I went in for blood work this last week I asked about it. They said for $1500.00 I could find out. I am checking with my insurance to see if they will cover the test.
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
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