| | Joined: Aug 2007 Posts: 32 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 32 | I completed my treatment over a year ago, but I am now beginning to suspect a connection with HPV. This was never mentioned to me by any of my doctors. Is there some stage of diagnosis/treatment where this might be tested for? If I am HPV positive, does it continue to be active in my mouth and possibly cause another tumor? Any information would be appreciated.
Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
| | | | | 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 | We would all like to have definitive answers to these very same questions. Some of the donation money that comes to OCF is being spent at Johns Hopkins right now to try and get preliminary ideas about some of this. The only time they could have told for sure if the lesion was HPV positive was in a biopsy of any removed tissue.
Last edited by Brian Hill; 03-12-2008 04:30 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: 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 | Debz,
Gotta ask...who told you about the genes theory and what exactly did they say?
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 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | [quote=auntypebbles]LOL @ Kevin.
What about my cancer, i feel left out, mine was caused by genes
[/quote]
Deb, you and I are in the same boat. Mine has also been classified as genetic. My mom was diagnosed and treated with thyroid cancer when she was 15 (1940). 16 years later when I came along, more thyroid cancer resulting in removal. She passed in 2006 while I was enduring my treatments at the ripe old age of 81, but only after going thru 5 more bouts with the disease. So genetically, I am definitely in the hot seat.
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 | Tonight the entire article from the Journal of the National Cancer institute will be available on the OCF HPV page for reading. Risk Factor Profiles related to HPV status, Dr. Gillison et.al. Journal of the National Cancer Institute, March 2008 (PDF)
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: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | It is always interesting to me that we as a culture or a species so want to know everything. I'm as guilty of it as the next person and it was driving my husband crazy - constantly trying to figure out what he may have done... Our MO told us this is a fluke, a lightning strike and we just have to accept and move on to battle phase. So that's what we are doing. Not only is acinic cell rare, but having it be aggressive and moderate grade is even more rare. I can't even find people with this cancer, much less research on it - so we have to stick with the lightning strike theory :-)
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Well thank GOD that marijuana is off the hook! I was sweating that one ;-) Darrel Rakestraw (God bless his soul) would have approved as well.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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