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#122346 09-27-2010 01:25 PM
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KennyL Offline OP
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Does anyone have any links to a good Clear site to read a little more about HPV symptoms and transmission?


Just here to hopefully get a few answers as well as share the little information I may have to offer the group.
KennyL #122358 09-27-2010 03:07 PM
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There are no symptoms, per se, to oral HPV related cancer as the cancer can go undetected until it is Staged a III or even a IV. Most times and I say that with some hesitation, patients first notice a non painful lump on one side of their neck which leads to some biopsy OR they notice a "difference" in the back of their throat or tonsils and again a biopsy follows. The typical Oral HPV patient is a white male (younger than most non HPV oral patients) with a Primary in either the base of tongue or tonsils and again, usually by the time it is discovered, it has already spread to a node or 2 on the same side of the Primary.

Re transmission....HPV is extremely contagious and may easily be transmitted to the oral cavity by French kissing, mouth to vagina or any other means that collect cells in the vagina and transmits them to one's oral cavity (you can be creative here). This all assumes an HPV presence in the other person.


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.
davidcpa #122365 09-27-2010 04:10 PM
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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.
davidcpa #122438 09-28-2010 06:28 PM
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With regards to HPV transmission, our MO just said many experts feel it could even be possible to contract the virus from a drinking glass one HPV+ has used. In our case we are baffled at how/when infection occurred since we've been in a monogomous marriage/relationship for 36 yrs. ????
Bonnie


Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
johnswife #122442 09-28-2010 07:57 PM
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So, can the HPV (gardasil) shots for young females be helpful in terms of prevention of oral cancers???


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
SusanW #122449 09-28-2010 09:42 PM
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Your oncologist is not a virologist. There is no evidence that the virus can live on a surface for any period of time. Only in the last 12 months have we even been able to culture it outside the body to study it, so what we know about its life history, is minimal. The science community at large believes that the vaccine will protect from all disease that HPV16 causes, anal, penis, vulvar, cervical and oral cancer. If you can't get the virus, you can't get the diseases that it causes. There is no scientific clinical trial that proves this, but the logic dictates it. This is discussed to some extent at the bottom of the page I referenced above.


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.
Brian Hill #122457 09-29-2010 05:10 AM
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I also heard that comment (re acquiring from a glass) from a viral researcher at Moffitt who told me that it would be possible for the virus to exist on a recently used glass and I imagined a party atmosphere. As Brian says there is way to little info out there about HPV considering the worldwide population it invades.

After I pushed and pushed to find out what caused my cancer and Moffitt finally (post Tx) sent my slides to Johns Hopkins which confirmed HPV16, my wife & I who were married 18 years at the time were talking to my SO at Moffitt and I was sitting down between the 2 of them and my wife casually asked the Dr "so how do you get the virus?". Innocent enough question, right but I had failed to tell her anything about HPV so the Dr blurts out "IT'S AN STD, IT'S SEXUALLY TRANSMITTED." Well I didn't have to look at my wife to know that after enduring all I went through with my Tx that I was a dead man walking when, as he must have sensed the icy tension that had suddenly come come over the entire hospital, he states "but it can take decades for the virus to cause cancer." PHEW, I WAS ALIVE AGAIN!! Anyway, my point is that some researchers still believe the virus can go dormant in the body for decades. No one knows why it goes dormant or why it comes back out but that MAY explain Bonnie's question.


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.
davidcpa #122488 09-29-2010 12:49 PM
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I've also read that it can take decades for the cancer to show up after HPV infection. I had a class 2 PAP (suspicious cells - precancerous) that had to be treated with a colposcopy and cryosurgery 30 years ago. No one knew about HPV back then, but I probably had it. Imagine the guilt thinking I might have passed this on to my husband. He blames it on his previous girlfriend, who really got around, but who knows? I can imagine your discomfort David, albeit from another angle.
Our ENT surgeon was fairly sensitive when I blurted out that I'd had precancer of the cervix, and said there was no way of knowing where Gordon's HPV came from. He said you could even get HPV from a doorknob (no off-colour jokes, please!) but I think he was just saying that to diffuse the atmosphere. It's about as plausible as getting HPV from a glass. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Elianne #122495 09-29-2010 03:42 PM
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There has been no proof that the virus goes dormant, though as David says some people believe this since SOME other viruses can. But we have found no evidence in anyone of a dormant HPV virus and that has ever been published in any peer reviewed literature.

Sometime in the next year we should have an idea how long it can live on a surface outside of a cell. No one currently believes this is any protracted period of time, but if it did, there would be way more of it around in people than there is. Just think, one HPV positive person could touch a door knob entering Grand Central Station, and infect hundreds of thousands of people in a day or two. That isn't happening.

Given the multiple contacts that most people have with others, pegging any one person as the one that gave it to you is impossible, and an exercise in how to start useless fights with people that you care about. The blame game in something like this has no means to be accurate, and no one should engage in it.


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.
Brian Hill #122501 09-29-2010 04:52 PM
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Of course, blame is not helpful to anyone, I agree. It's hard not to want to know where the HPV came from, but it's a futile exercise. I was ridden with guilt for months after Gordon's diagnosis. As for the door knob theory, I'm pretty sure the ENT was pulling our legs a bit (he also said "no kissing") in an attempt to ease the tension. He's known for having a somewhat offbeat sense of humour. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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