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#77782 07-30-2008 09:38 PM
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Does anyone know if it's possible to get an oral HPV test like the digene test? I wonder if the same test can be used in the mouth. I've read some studies that have used this method, and also an oral rinse method. Does anyone have more information that could shed some light on this?

MSG #77791 07-31-2008 04:55 AM
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I am not aware of any test currently being used to confirm HPV orally other than a biopsy.

You seem to be really fixated on HPV, even more than me which is way out there, and I more than anyone wants the public awareness on HPV raised to the 10th power but certainly not even a small percentage of the population that is exposed to the virus ever ends up with cancer from HPV so calm down a little. Maybe I've forgotten but what are you doing about getting your tonsil and throat looked at?


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 #77806 07-31-2008 11:13 AM
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There is no oral test right now though one is in progress for availability hopefully through the FDA in late 2009. OCF is working with Digene (actually their parent company in Germany Qiagen) Even with this test which will look for high risk versions of the virus, 16,18,31,33,35.... it does not mean you will develop cancer if you get a high risk version from the 120+ possible versions that we know of out there. Many people's immune systems deal with this quite successfully, and you may be one of those.

Women can get a test when they get their pap smear, which is essentially brush cytology, and a second test for HPV done on the same sample, and the CDC is recommending it. But for guys, there is no test availble in the near future. When Daivid of all people says someone else is obsessing over this, he is usually right. I would listen to him.

Lastly, not to hijack the thread, David if you want to call me on the phone I have some HPV information that I cannot release to the public yet from a study that OCF sponsored with Gillison at Hopkins that the results of will interest you, and keep you up to speed. It will be in a major cancer journal in the next 3 months or so and everyone will know this, but I know what this information means to you.

By the by, the thinking among some prominent HPV researchers now is that even more casual contact can transfer the virus to the oral environment, so oral sex may not be as big a story in the future as it has been.


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 #77815 07-31-2008 02:45 PM
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Over a year ago a HPV researcher from Moffitt told me that HPV is one of, if not the, most contagious virus' known to mankind, even more so than HIV. She also said that one could transmit it orally by kissing or even touching the inside of your mouth with your finger. She said oral sex was, in her opinion, only one of the ways to transmit it to the oral cavity.

And yes, I'm sure this site would have never thought that I would have told anyone to calm down over HPV but there is a first time for everything. Guess I'm getting old.

And thanks Brian I'll take you up on the info as soon as I can catch you.


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 #77825 07-31-2008 05:54 PM
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I'm betting that's why my RO told us, well it was us then , LOL , that no kissing for at least 6 months. I iwhs they had given me a name for my OC beside that it was a unique type.


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
EzJim #77835 07-31-2008 09:19 PM
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The RO was worried about conventional bacterial infections when your are immunocompromized from the treatments and have open sores in your mouth. Everyone has plenty of usually benign (in small quantities) harmful flora in their mouths. That is a bad time to get infections, but in general, since I have heard this advice before, it's a waste of words. When my mouth was bloody with mucocitis sores and I was spitting chunks of it into the sink on a daily basis, kissing was the last thing on my, and my wife's to do list.

And yes this is way easier to get than HIV, which is suprizingly difficult disease to get through any conventional means. HPV only requires the casual touch of skin against skin. HIV require a transfer of fluids, saliva, blood, semen and even then it does not live long in those environments. Where it gets a quick hold is not so much from infected blood touching you, it is infected blood getting into your blood stream. Think transfusions, think a sexual act in which surface pressure tears, no matter how small, allow it access to your blood stream. That's why HIV positive people are no longer biological pariahs in schools or society in general. I can remember when people were afraid to shake the hand of an HIV patient. This is BS. They will not give you the virus by such a simple act. Ignorance emotionally hurt many people.


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 #77842 07-31-2008 10:02 PM
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David and Brian,
I appreciate your interest in staying current with research advances dealing with HPV induced cancer. I received confirmation from Johns Hopkins in the last week that my cancer was caused by HPV-16. Gillison had the lab test my tissue block for HPV-16 first because "95% of all SCC is caused by HPV-16" and that test came back positive. I didn't ask her, and hesitate to be a pest, if it is possible to have more than one strain of the HPV virus. Are you aware if anyone is ever tested in this manner? I realize this is likely more of a curiosity than of any clinical value but I have been trying to hypothesize as to why so few have HPV-16 actually turn to SCC. Also, I am very interested in understanding the research advances that apply to HPV induced SCC, especially research specific to HPV-16. What do you feel is the best way to stay current on these advances?
Thank-you


Frank

SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
Frank W #77849 08-01-2008 12:15 AM
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It is possible to have more than one strain of the virus, but in oral cancer, #16 is the bad guy. So to screw up your mind a bit further, there are even subsets of #16 (about 20) with varying degrees of impact in all this. But going into this serves no purpose unless you are a researcher.

What makes you think that so few that have version 16 develop oral cancer or other related cancers? There is NO data on this, though we know for sure that some have immune systems that deal with it. But actual statistics on how many? Not anywhere to be found, and not known to anyone.

95% OF ALL ORAL CANCER IS CAUSED BY HPV 16? Gillison did not say this - you misunderstood. I talk with her all the time, and is this is nowhere close to her take on the situation.

OCF is a financial sponsor of Maura. You will see her work published, and immediately when it is, you can read the synopsis on the OCF news or download the entire scientific article off of our OCF HPV page.


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 #77857 08-01-2008 05:45 AM
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Frank,

I have never seen anyone's path report on HPV come back identifying more than one strain of HPV so I don't know if that's probable but I have seen other than 16 being identified with SCC but as Brian said 16 is so far the No 1 villain in OC.

Yes 95% must have been misheard. The most recent statistics I have heard is that up to 70% of new oropharyngeal cancers are caused by HPV most commonly associated with the tonsils or base of tongue, white males, non smoking, casual drinking, college educated and born after 1948. Usually mets to the nodes are also common before they are diagnosed.

I too hope researchers find out why 80% of the population by age 50 have been exposed to the HPV virus yet so few as expressed as a % develop cancer. I was told my immune system must have blinked and let the leash on the dog go and Johns Hopkins is doing a trial on the effectiveness of boosting the immune system's response to post HPV exposure so lets hope they can reach a positive conclusion. But all types of cancer seems to be a mystery otherwise everyone that smoked would get cancer, etc.



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.
Brian Hill #77875 08-01-2008 11:50 AM
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Thank you guys for your responses. I'm very much aware that i'm a hypochondriac, and worried about this virus. I've given it much thought, and have done lots of reading, but, i'm ultimately looking to be more proactive with screening, etc... Even though our immune system may deal with it in the time being, from what i've read from other people and their experiences, HPV never goes away. It can flare up even 20 years later.

Much thanks for the help and advice guys. I really appreciate it.

By the way, i'm going to see my primary today to get referred to an ENT. I've already seen one two weeks ago, but my symptoms have been persisting with the new medication. I've been looking at my oral cavity to look for changes, or abnormal lesions. Which brings me to my next question:

Do you guys know of any good way to do screening for oral and throat CA? Is visual the only way?

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