With all the recent talk about HPV, Sex, has me all hot and bothered lol. I do have some questions, some which I have theory, knowledge about, but I still can't answer properly. These questions may have been discussed previously, but haven't seen much discussion about.

1. If someone already has HPV-16 related cancer, like many here, are they still at risk for developing another cancer from a different high risk HPV type strain, like HPV-18, they were not previously exposed to, if exposed later in life, under the right environment, immune system, or are they immune therefter from all high risk HPV strains?

2. Similary, is a person with HPV-16 oral cancer, still at risk for another HPV-16 cancer in other areas, being it's a systemic disease, like the anogeninital area, and vice versa, from chronic exposure to HPV, compromised immune system brought out from being dormant under the right environment in that area.

3. Also, the same with current HPV-16 cancer, once resolved, even if not resolved is there risk of developing cancer again (not talking mets) same oropharyngeal area that is not associated with the first cancer from chronic exposre to HPV-16, a little like "field of cancerization" from smoking, again, under the right environment. I guess could be classified as second primary, even to diffirent area than the first, lets say you have right tonsil, next can you develop the left tonsil under the perfect storm or are you again immune to HPV-16 cancer again.

4. Related to question #3, even Metachrounous or synchronous HPV-16 related cancer, which is usually related to smoking, exposure of carcinogens to the aerodigestive tract, but guess some HPV lung involvement may fit under this since some go there, not talking Mets.

Brian Hill has explained it. Thanks. Maybe I can repost.

HI there... not likely going to answer your questions well but here is my take.

HPV is a virus. Some viruses lay dormant. In my theory - someone may be exposed to HPV very early in life ( first sexual encounter - etc...) It likely takes a few things for it to manifest itself as a cancer. Firstly the right strain... then environment, and overall health. Maybe you are health compromised, maybe you smoke and drink, are stressed, or don't have the healthiest diet. Maybe all of the above. Regardless, this virus that is dormant, at some point finds a way in becomes active again and develops into a cancer - it may also have a lot to do with your overall immune system being able to kill the virus to start.

Regardless once it manifests itself you have a problem.

My one concern and I posted this on facebook today is Michael Douglas' claim that it was oral sex that caused his BOT tumor. Say what? If this virus is systemic, chances are it doesn't require oral sex, just sex, for it to be transmitted. It gives a false sense of security - "Oh he/she is HPV positive, but we've never had oral sex, so I can't get it." Hello. If you have had sex with someone who is HPV positive and are now positive yourself - you can quite possibly end up with an HPV cancer.

I do think because it is a virus, this is why it is easier to treat the cancer with rads and chemo but then the question remains, does it just kill the cancer, but not the virus (just forcing it into dormancy again)which could lead to another battle later, or does it kill both .

It does stand to reason that two different HPV's both of them cancer causing, could manifest at different times, so I would say yes, exposure, to say - a different strain could cause another dance with cancer, since you immune system seems to work against what you have - not having been exposed to it would mean that your system it would need to fight this virus as something new.

Thanks. Some as I thought. Brian answered on the FB page. Is high risk HPV-16 really systemic or just effects the squamous epithelium where it entered the body from contact or exposure, make DNA changes, where it can lay dormant there, manifest later on under right circumstances in the area exposed. I have to do more reading, I forget more than I retain lol.

Paul,

My take...

Most of your questions in my opinion can not be answered because of what we don't know about HPV. We don't know really how it's spread; we don't know if it goes dormant and if it does, we don't know what triggers it back out and we don't know why some of us clear the virus and sometimes it invades the cells successfully. We also don't know if once you acquire and clear it and you reacquire it are you immune or does your body have to attack it again and again.

Moffitt BTW is currently doing a study to try and determine how we acquire it.

Thanks for the input, David. I think the immune system plays a part, so that may be the best we have right now to strengthen that. I guess time will tell. I was asking myself the questions, and realized I could not answer fully to some extent, and certain scenarios are possible, everything is, but not likely, as Brian Hill explained, and dare not to try to explain his input. Maybe after reading it 10x lol. I hope the study comes out, fairly quick, but probably takes time.

I would love to know the answers to these questions. Being 25, I have a long time to potentially get reinfected with HPV and develop another cancer or develop a second primary (if that is possible). The fact that I developed cancer so quickly and at a young age worries me. Its possible my immune system is unable to clear HPV or I have some other genetic predisposition. My mom never was HPV+, so my docs don't think I was born with an infection.

I did a lot of reading on some threads about taking the HPV vaccine post treatment. It seemed some said it could help while others said that it will not help once you have been infected. I do wonder if it would make sense to get vaccinated, if only to prevent an infection of HPV18 (vs HPV16 which my cancer was positive for). Does anyone know if an infection of HPV16 imparts antibodies and immunity from an HPV18 infection? I would assume since they are distinct it would not, but I could be wrong.

Has anyone heard of someone in their 20s getting HPV+ cancer? My RO said she hasn't seen or heard of anyone as young as me, which is unsettling.

Andrew, yes unfortunately it is becoming more common for 20 somethings to have HPV+ cancer. Of course its not an everyday occurrence but it does happen.

GET VACCINATED!!!!! The Guardisil series of shots are available to young men and women ages 12-26. If you can prevent getting HPV why not get the shots. Of course you may have already been exposed to this virus but you never know, the vaccine could protect you from this STD ever becoming anything more serious.

I was 58 when I was Dx'ed and post recovery I traveled the "HPV speaking circuit" with Dr Anna Giuliano, the lead HPV researcher at Moffitt. Even in my advanced age and being married for 20 some years I asked her that question and after talking a while she said "if you were single you should get the vaccine." Well I wasn't and I didn't but I would have if I had been single and I would if I were you. Remember I'm NOT a Dr; I'm not a HPV research scientist and I'm not a Gardasil vaccine expert.

1. still not fully sure. Possible, but not probable. Most are HPV-16. see vaccine info below.

2. May be possible distantly, but HPV does not have field of cancererization, unlike tobacco caaused, which can effect the whole aero digestive track, and HPV usually is site specific, with one area of involvement, not involving several other structires. I heard you develop an antibody once exposed. I guess you can be exposed to HPV the same time in several anatomical areas?

3. Again, you may have an antibody after exposure to HPV-16

4. HPV does not have field of cancerizsation like smoking related does. it is more site specific, not invloving other sites at once, but metastases or spread is different, and cancer can go anywhere.

I have read information from John Hopkins, Current preventive vaccine stragedy is not effective for treaating existing infections or established HPV-related disease, Treatment established disease requires activation of the cellular immune system, both CD4+and CD8+Tcells, which cane recogniize virus infected cells. There is a difference between precevntive vaccines and therapeutic vaccine straregies.

There is a safety study at John hopkins for HPV DNA Vaccine, to help your body's immune system recognize HPV-Infected and associated cancer cells to treat HNC patients.

http://clinicaltrials.gov/show/NCT01493154

Hi David - Was your wife ever tested for HPV? I ask because when I was diagnosed and we learned the tumor was HPV+ my partner was told that they would just assume that she was also positive. I don't know what difference it would make, testing her, except that if she was negative maybe she should get vaccinated? I have felt that throughout my cancer diagnosis, treatment, and follow-up, the HPV issue was never fully discussed with me, and that might be because I was dealing with oncologists who know how to treat the cancers that are a result of the virus but are not themselves specialists in the virus. Or it might be because there are so many unknowns where this virus was concerned. -Michelle

The Gardasil series of shots are available to young men and women ages 12-26. The younger the better! By getting the shots prior to becoming sexually active they will be protecting the person from the strains of HPV which causes genital warts, anal cancer, ovarian cancer and oral cancer. As far as I know, the majority of adults already have been exposed to HPV at one point or another. The jury is still out on how easily HPV gets passed around (doorknobs, toilet seats, very causal contact like shaking hands, etc). While many adult have been HPV+ at one point or another, most can clear this and have no ill effects while a small percentage cant clear the HPV and it will go on to cause them serious health problems.

Just a bit of clarification on Christine's post which is mostly correct. The transfer of the virus requires a pretty robust skin to skin contact. There is no evidence that you can get it from inanimate objects like doorknobs, as it cannot live outside of a cell for very long. Skin to skin transfer of HPV is common especially in very young children who get non-cancer causing varieties very early in life from other kids. The 9 known cancer causing types (there are an additional 6 that are suspicious for causing cancer) are not transferred that easily, and in oropharyngeal cancers we are really only worried about one in particular number 16, which is covered by the vaccine.

The vast majority of sexually active Americans will have HPV at some point in their lifetimes, the good news is that in 99% of them their immune system will recognize it as a threat, and in less than two years clear the infection and leave a protective antibody behind. I am part of the lucky 1% that will get a cancer from it.

Michelle Ann - oncologists are definitely not virologists or even close to epidemiologists, who understand this the best. So most of us do not get good HPV information from the oncology world, but that is starting to change as this becomes a more common cause of our disease. The oncology treatment world can be kinda cavalier about learning something new when at this point in time it does not create changes in the treatment protocols. HPV+ or not, people currently get the same stuff. But in the next few years that may be changing as the HPV+ people enjoy about a 30% survival advantage, and perhaps some of the radiation or chemo can be dialed back with the same clinical end results. Of course before anyone does that, the FDA has to approve a protocol and trials have to be done.

Thanks Brian, Hot topic now!

Michelle Ann,

No she was never tested as a result of my HPV finding but she had/has never had any positive pap smears. I was dx'ed 7 years ago and believe me compared to today that was the Dark Ages of HPV+ SCC. Despite the fact that I didn't present myself as a typical OC patient even Moffitt responded to my repeated questions of how did I get OC with "What difference does it make, you have the cancer and there's only one way to treat it so let's move forward." R U kidding me????? Of course it made a difference to me.... It was not until post Tx that I learned of a Dr at Johns Hopkins (Dr Maura Gillison)that was exploring a connection between HPV and oral cancer in people that fit a particular profile. I called her and spoke to her and she asked me to send my cancer slides to her. I did and her findings were positive for HPV16. Since then it has been my mission to inform everyone that will listen, especially men about HPV. Back then the ONLY information being put out about HPV targeted females and was about cervical cancer.

I took my story to the newspaper; to radio; to TV; Moffitt asked me to co teach an annual 1/2 day workshop on HPV+ SCC to oral cancer docs; I testified before the Florida House in support of a bill that would have required girls entering the 5th grade to get the Gardasil vaccination (didn't pass) and I testified before the CDC as a spokesperson for the OCF in support of giving the CDC's highest recommendation for the male version of the Gardasil vaccine. I even talked so much about HPV on this site after I found out my cancer tested positive for HPV that it created a lot of animosity and I almost left the site. Remember back then the ONLY OC cause discussed on this site was tobacco.

We've come a long way baby....

That's awesome you called Dr. Gillison. There is a recent study from Mt. Sinai School of Medicine (my hosp), which may posted here in HNC News, elsewhere, that long term partners of oral HPV cancer patients have no significant risk of oral HPV.

"In the first study of its kind, researchers including Marshall Posner, MD, Medical Director of the Head and Neck Medical Oncology Program at Mount Sinai, sought to determine the prevalence of the human papillomavirus (HPV) in spouses of people with HPV-positive throat cancer, which is derived from the strain of HPV known as HPV16. They evaluated the viral load of 83 couples in which one partner had an HPV16-positive throat cancer, using a novel oral rinse and gargle test. They found that 54 percent of people with HPV16-positive throat cancer had evidence of HPV16, the strain associated with this type of cancer, at diagnosis, and six percent had it after a year, despite treatment. In their long-term partners, prevalence of any HPV was five percent in female partners of men with HPV16-positive throat cancer and 29 percent in male partners of women with HPV-positive throat cancer-findings that are comparable to the general population. "Recent research suggests that husbands of women with cervical cancer are at greater risk for a future HPV16 positive throat cancer, and patients with throat cancer have expressed reasonable concerns about infecting their spouses with the virus," said Dr. Posner. "Ours is the first trial to evaluate the prevalence of HPV in long-term partners of people with throat cancer, and the findings should reassure those in long-term relationships that their risk is very low."

people who read the OCF news section or subscribe to it for free got this story on June 1st

http://oralcancernews.org/wp/no-inc...of-people-with-hpv-related-oral-cancers/

Thanks, Brian. have to see if I subscribed already, I don't think so since I had a hard time with iPad, as usual, not being techy, but have to do it with the laptop.

Dr. Gillison also evaluated my tumor for HPV. She was gathering data "way back" as you say David and I got mine into the database. I am not sure if it was her or her colleague that used me as a case study on managing long term radiation issues by illustrating the damage that surfaces later in some patients.

Ed

Just some clarity around Paul�s post taken directly from the abstract of the study itself which was presented at ASCO 2013 a couple of weeks ago. ASCO is the main American Oncology meeting.

For those who also like the data, the link to the original work is below.

http://meetinglibrary.asco.org/content/111185-132

Summary of the figures
The study looked at 149 patients with oropharyngeal cancer and 81 partners.
Of the patients, 65% returned positive results ANY HPV and 52% for HPV 16 (which is the one we are most interested in) at diagnosis. Of the 81 spouses, 7.3% had ANY HPV and 2 with HPV 16 (approx 2.5% by my calculation but not included in the abstract).

The abstract results tell us that one year later, 103 patients and 46 partners were followed up. Of the 52 patients with HPV 16 diagnosed at begining of therapy, 4 still had evidence of persisting infection. That�s less than 4% for the total group and 7.7% of those who had HPV 16 in the first place.

Of the 46 partners who were followed up, 2 (both female) had previously returned positive results for HPV 16 and appeared to have cleared the infection.

There was also an update on the same study presented during one of the lectures and the figures were updated to 166 patients and 94 partners with follow up of 115 patients and 51 partners 12 months later. The outcomes remain more or less the same.

Since a small % of those infected with HPV 16 still had the infection post tx and 1 year later was there any discussion of why or how. Brian and others have said that the body creates antibodies once infected that prevents future infections so if that's the case then what can explain their findings?

Good point David. We know that HPV-16 takes two years to clear, but in men it takes twice that amount, so it's 4 years. There are some HPV-16 strains that may be more resistant to treatment, and of different biology, and some even show failure rate after 5 years. I read before that multiple exposures of HPV increase the risk of HPV SCCC, so that goes back to your question, how, if there is an antibody after exposure. More HPV discussion to follow. Where is MD when you need him

The body in PEOPLE WHO HAVE AN IMMUNE SYSTEM THAT RECOGNIZES HPV 16 AS A THREAT develop antibodies, not patients who do not. (We didn't and so we got the disease.) Many patients come out of treatment theoretically with HPV still in their system, but without a good way to test for it, no really good study has been done of this. Ironically some develop antibodies and some do not. Treatment doesn't change your immune system. I don't know of but one study that looked for circulating HPV antibodies after treatment. That was a really small group and strong opinions about this could not be drawn from it.

I don't think that anyone who knew about this study going on, expected anything to be different than what they found. Spouses are mathematically just like the general population to begin with (some with protective immune systems and some without protective immune systems to HPV in ratios that should be identical to a general population), so their antibodies re this would match those in the general population, not be unique because they were married to someone that had HPV 16 disease. (Or in the general population date someone with HPV16). The patient is the person that is different, not the spouse. The spouses odds are the same as anyone in the dating world for getting and clearing HPV. This study was done to quell the dysfunction in sexual and intimate relationships between oral cancer HPV+ patents and their spouses, which is a common phenomenon. Personally I don't think it will change things much, facts as they relate to making intimate decisions only speak to one of the reasons for dysfunction.

By the by, who said that men take longer than 2 years to clear an HPV infection? And where is the data on multiple exposures? I don't even know how you would study that�. Reference please.

Thanks Brian, I'll have to read this thee times to finally absorb it all. I read that "twice as long as women comment," in a otolaryngology HPV, head and neck cancer book, and will have to look for its reference, and know it wad referenced in others as well. The multiple exposures, I could be misreading, could mean multiple infections, but will check that too. May have been with HPV cervical cancer, not sure. Hopefully I can get that today.

Most of what we know about this is derived from the cervical cancer model, and while there are some correlations that can be made, the science of what happens in one anatomical structure when compared to a completely different one is not a straight across transfer. In oral we are looking at heavy involvement of lymphoid cells which are not the same kind of cells that are on the cervix. Even the two year clearance point which is a reference made often is related to cervical, we have no clue that I am aware of in oral that it is the same. One study took a cursor look at this, (NHANES). We all just suspect that the immune system deals with both in the same ways, and the same amount of time.

So this is again a demonstration of how far behind we are in understanding HPV16 itself, and working from the data which is all related to a different anatomical site with different characteristics. We can't scientifically assume with absolute certainty that it all behaves the same, so in the absence of hard data, we make scientifically based GUESSES.

Another example is the decades of dormant or latent development of a cancer so frequently mentioned by doctors in the media. We know that some viruses behave this way- but others do not. People like Posner and others are speculating when they say this because it seems to make sense. But there are no existing science articles that prove this in HPV the way we can prove it in HSV-1 for instance. When in its dormant state we can go find it living on the ganglion of your nerves. HPV -no clue. So there is a lot of scientific supposition and speculation, that may very well be right, but if there is a dormancy period after an early 20's exposure how do we account for the 20 year olds that re getting an HPV+ OPSCC? Absolutes in cancer should never be used. There is also some logic socially to support this idea. Maximum sexual partners and exposure happens in late teens and twenties. After that, people usually end up in stable monogamous relationships limiting their exposure - but late 40's is a peak for cancer coming to light. That would be a good argument for dormant period of development. But remember no hard science to support any of this.

Posner has also promoted the idea of self inoculation. Someone transfers a virus from their genitals to their mouths. Interesting idea.... not one shred of evidence that suggests this actually occurs. Doctors that are talking heads in the media get lots of weird and off the cuff questions, which some attempt to answer on the fly. When they do that, even if they are a knowledgable treating doctor, they sound authoritative on TV, but at the end of the day in the science community they are frowned on for going to where there is no evidence and speculating as if it were fact. Sometimes it is best not to worry so much about being thought of in the media as the "go to guy" to get your name out there more (some of these doctors actually have agents which work to get them bookings) than to just say we don't really know for sure when the reporter wants an answer that has meat on it. The difference in all these doctors in my mind is that if you have your name on a peer reviewed journal document, you are the real deal. Otherwise you are just another TV talking head. Said with respect for these guys that are constantly being put on the spot, by someone who, as a lay person, has no problem with stating that I don't know in public. After all I'm just another guy, not a doctor that should know what's what.

There is a lot of data on cervical, not so much on oral.

Brian, here is the book name, chapter, quotes and links (through OCF I can't copy pdf) to the two items I mentioned in this thread:

"HPV and Head and Neck Cancer. Guest Editor Sara I. Pai, MD, PHD
Otolaryngollogic Clinics of North America.Volume 45. Number 4. August 2012"

Biolgy of Human Papillomavirus Infection and Immune Therapy for HPV-Releated Head and neck cancer. Simon R. best, MD, Kevin J. Nipaerrko, AB, and Sara I. Pai, MD, PHD:

"Most HPV infections are cleared by the immune system within 2 years, defined as an absence of HPV DNA detection on follow-up serial swabs after after detectionof the initial infection. 2 At 12 months, 66% of infections are cleared; this increase to 90% at 24 months. However, in men, HPV-16 has been identified as one of the slowest viral types to be cleared, and takes nearly 2 times longer to be cleared than other high-risk viral types. 2. This is interesting finding because HPV-16 is the viral type that accounts for more than 90% of HPV related oropharyngeal cancers is the United States, and this disease is more prevalent in men than women, suggesting possible gender differences in the ability to mount immunologic responses agianst this viral type."

2. http://www.oralcancerfoundation.org/HPV/pdf/LANCET-HPV-in-men-2011.pdf

Peristant oral HPV infection is a risk factor for the development of HPV-related Oropharyngeal cancers. The prevalence of any HPV type in the oral cavity for both men and women is approximately 6.9%. However, when separated by gender it is signiifigantly higher in men (10%) than in women (3.6%). 5 Oral HPV infection is associated with certain sexual behaviors, with risk increasing with the number of oral sex partners. 6 In healthy individuals, the clearance rate for oral HPV infection at 6 months is approximately 40%. 7

5. http://www.oralcancerfoundation.org/HPV/pdf/Jama-2012.pdf

The take away statement in the Lancet article was that clearance time OF ANY HPV, was 7.5 months, but for the one that we all worry about HPV 16 it was about 12 months which correlates with the cervical clearance experience of 16 & 18. Very common #'s 6 and 11 can take years to clear, the ones known for genital warts.

So if you really want to be grossed out about something (as the science guy, I seldom get to frame things in those terms, that is just me speaking as a guy) 50% of all men have a skin infection in the gentile area (not only your equipment but the surrounding tissues) in America currently have a non papilloma producing infection with 6 or 11 or both. The number for women is 60%� so while it isn't producing warts in most individuals, it is still there, and still transmittable to others. I have never been more pleased that I am not in the dating world today. eeeewww�.

Also the very important Gillion article from the NHANES study, really told us tons abut who, and what age, with what behaviors, gets infections, and this study defined the demographics of who is getting this. There is a lot of meat in this paper. Bottom line 7% of us have an active oral HPV infection at any moment in time across all population types. However when you look at age, the number really changes that overall average with two peaks one in the forties and one in the 60 year old groups. The paper states (and this is obvious in most diseases), that this was expected, and that there was a distinct relationship with higher age to increases in infection. As we age, our immune systems become increasingly incompetent. Welcome to your golden years. So we get more of everything, HPV infections are just another thing on a really long list.

Umm Brian, I don't think the figures quoted from the Lancet are correct. the

[quote]The take away statement in the Lancet article was that clearance time OF ANY HPV, was 7-52 months, but for the one that we all worry about HPV 16 it was 12-19 months which correlates with the cervical clearance experience of 16 & 18. Very common #'s 6 and 11 can take years to clear, the ones known for genital warts. [/quote]

It appears to be a layout issue but the figure you are reading as 7-52 months is actually a single median figure of 7.52 months (ie less than 8 months) for ANY HPV and 12.19 months for HPV 16

I can find no suggestion that time to clear is any different for men than for women. And certainly not 4 years

Nice catch Karen!! Thank you, we don't want bad info out there. Well, at least we got this right - it is the same period of time. I'm going to go back and edit that post later to get the bad info off the thread so no one is confused in the future.

Thanks for the updates, Brian.

I'm still back trying to visualise self-inoculation!

lol samkl

I'm betting that like me, you were thinking about that old joke about the dog and his balls ...

but they mean hand to wherever - enthusiastic masturbation in other words

OK so explain to this CPA the mechanics of the vaccine. If my immune system failed to attack my HPV at least this one time and assumptively (which I know I can't assume) will/would never recognize HPV as a threat, then why couldn't the vaccine, even at my advanced age, help to protect against future exposure?

All these HPV factors, studies, scenario's, questions sound like an Abbott and Costello routine for those that remember the show, "Who's on first? A funny baseball comedy routine that's confusing Lol. I'm going to have to read these studies several times, open an investigation on all the usual suspects, HPV-16, 6, 11, E-6, E-7, p53, EGFR..., and start taking names, and make a family tree connecting them all! It may take years, but we'll get to the bottom of this

The vaccine only works in people who have never encountered the virus. But you're making an assumption, that the vaccine creates antibodies that recognize the viral dna like a flu shot does. The people that invented this vaccine were really smart. They created an injection of the protein that coats the virus, (this later dissolves after the virus enters a cell and becomes something different - the E6 and E7 onco proteins that knock out two critical parts of the cells dna that control apoptosis and immune signaling [ p-53 and rb] that are called the tumor suppressor genes) which your immune system learns to recognize. Unlike other vaccines this is one of the first to use a part of the virus which is not dangerous to us to alert the immune system. There is no viral dna in the vaccine shot. So your immune system goes out and destroys invaders that have this unique protein coating on them, not targeting the virus itself (they just happen to be coated with the target protein). All this is about making vaccinations safer without giving you a small part of the disease which is the way most vaccines work. So theoretically it might work in you because your body did not recognize the virus itself. But many HPV patients that have been treated for cancer do develop antibodies after treatment for some reason yet unknown, and that MAY account for why so few of us that were HPV+ do not end up in multiple recurrences, or at least at far lower rates than tobacco patients. So you may already have protection, and unless a researcher did an analysis for the hpv16 antibody in you, you wouldn't know for sure.

Brian explains it better than anyone. Here is something I posted on another post, but think it's appropriate here. It may veer off the current discussion, but is HPV related. I have read, HPV outside the oropharynx, like oral tongue, elsewhere, do not have the same treatment response that we've seen in the tonsils, BOT to date. Just mentioning since there is talk with deescalation of treatment with HPV-positive in the Oropharynx, which should only be used in clinical trials, for now, but has anyone heard this, reason? I would think that Tobacco may be a factor. Is there talk of deesculation in areas outside the oropharynx for HPV-16 postive patients.

Karen, I was thinking one would have to have more imagination (and a much better lower back) than my good self.

Soooo unless someone would/could determine that I did or did not have a antibody for HPV post Tx then is it possible that the vaccine could benefit me? I just go back to that trip I shared with Dr Anna Giuliani, Moffitt's HPV researcher, when she told me that if I were still single I should get the vaccine.

David
My friend the epidemiologist (the one that put the Australian submission together for vaccine for boys) suggested that Alex and I should both have the vaccine - his reasoning being that if Alex couldn't clear it by himself he would not have antibodies. He told me that he had some anecdotal evidence that the vaccine might have some effect on decreasing the incidence of dysplasia in older women (cervical) which applies the same thinking.

When I asked Alex's radiation oncologist about it, he looked confused and said, "that would be a bit like shutting the gate after the horse has bolted wouldn't it?"

I must admit, I lean more towards the epidemiologists thinking but have no scientific reason for thinking that...

Most of the medical community are not even aware of these additional HPV types found on the tongue cancers, let alone thinking about changing protocols related to them. We have seen a number of tongue cancer patients who are non smokers and appear to be HPV negative respond poorly to treatments. However there is no data that shows that they were tested for these other HPV types, and we don't have any data on how these other HPV type respond to treatment.

Karen and David have good questions. I tend to believe that none of us would benefit from being vaccinated after an HPV16 oral cancer. However, I like the Australian doctors ideas. Just musing on it (as an unscientific approach in logic) could you fool the immune system into looking for this protein with the vaccine, and destroy any possible HPV 16 that was combined with it in your system now or in the future? I have no clue, and since recurrences in HPV patients are few, what value this might be, except to quell our fear of things that go bump in the night, by feeling that we have done everything that we can. (counting on a psychological placebo effect)

Thanks Brian for the reply. I was only talking about HPV-16 in the oral cavity, oral tongue, larynx, nasopharynx, which is more uncommon, but I omitted that.

There are questions that I have about this subject. I have had 4 specialists shut me down on the subject. I asked one Oncologist if my child should have the vaccine and his ONLY remark was that I needed to ask myself if that would cause my child to be promiscuous. This child is almost to the cut-off age for the vaccine.

Would anyone with HPV knowledge be willing to answer me in the private forum? I will be happy to post any questions regarding anything that will help others on this site afterwards. Right now, it would be easy for anyone that we know (including children) to figure out who I am from my questions. I may have stupid questions since 4 out of 4 specialists have ridiculed me for encouraging promiscuity or not understanding that this is a virus like a cold and why was I even asking a single question about it.

In the mean time, we were asked if we 'passed' it on to our children during pregnancy or childbirth.

Thanks.

Check OC in the news at the opening page: why-HPV-vaccination-makes-a-difference-against-cancer

I can't link the page.

[quote=PaulB]Check OC in the news at the opening page: why-HPV-vaccination-makes-a-difference-against-cancer

I can't link the page.[/quote]
Here's the link. It's a pickup of a CBS News report on the HPV vaccine.

And Stacey, if the only answers you are getting from the physicians you talk with are about how you feel about encouraging promiscuity by giving your children vaccinations against something that could potentially save their lives (and the lives of those they come in contact with -- HPV isn't spread only by intercourse or oral sex), maybe it's time to find some different doctors -- ones who make medical judgments, not value judgments.

Thanks Leslie. Stacey, there are also dozens of links if you go to "HPV Connections" at the front page that will tell you all about HPV.

Paul,
Related to point 4 below, I've been trying to find information about spread of HPV+ cancer. I had the entire moderately dysplastic papilloma removed from my uvula. Regarding spread, ok this lesion is gone now. But say three months down the road, another papilloma could pop up on my tongue or tonsil and I could see it within the week it appears (right now I'm checking my mouth weekly), that new growth could now be SCC. This is my example for what I thought you may be saying in point 4 below.
Thanks!
Svet
coughed up benign papilloma Feb 2013
Moderate dysplasia growth removed from uvula 6/10/13

Stacey, the OCF forum is anonymous, unless you specifically post identifying info. I checked your profile and didnt see anything there at all that was identifying. Many people move on to be friends with others outside of the forum while others dont and keep this part of their lives private.

I think you would find greater success by asking your family doctor and/or pediatrician to discuss the shot with you. My family doctor is very knowledgeable about the Guardisil shot and vaccinated both of my children. Maybe the physicians you are asking dont understand the part the HPV vaccine plays in helping patients to avoid not just HPV+ OC but also cervical cancer as well. Given the responses they gave you, I would seriously wonder about their qualifications. I would also be surprised if these doctors were affiliated with a major CCC considering their lack of knowledge. I am shocked that 4 doctors know nothing of HPV/the shots and or even how Australia made it mandatory for all children to be vaccinated with the HPV shots as part of their required shots like MMR.

Stacy, anyone who suggests that this leads to earlier engagement in sex is a doctor that has a social agenda. Personally, I want my doctors to be interested in the science of my problem, and give me science based answers, not ones that speak to their prejudices, liberal or conservative bias, nor religious beliefs. Here's an abstract from a study about one of your questions. You need a new doctor.


Pediatrics HPV article

Trying to fill in some blanks in understanding some of the HPV information presented. What (if any) is the difference between HPV 16 and HPV 18? Are both found in Oral cancer?

Thanks,

I don't know about the vaccine and my kids yet, but I have no clue how I acquired the virus in the first place. And nobody besides this forum ever mentioned passing it along when they were born. So theoretically my young children have already been exposed? Yikes. I wish the HPV discussion wasn't all about sex, because I think there must be other ways to contract it, and I certainly don't want my kids going through this. I had no idea what a nightmare this could be, and I am only beginning my journey.

Scary stuff. I know my sis has reconsidered her stance on the vaccine. We are not anti-vaccine folks, but I did delay some in my kids due to reactions, and this one is so very new.

Kristen

We had all 3 of our kiddos vaccinated. Watching their Dad go through OC and then me having a hysterectomy, they were all on board! No reactions at all and we have the peace of mind of knowing that they are safe from this particular issue. Just my opinion.
Kathy

16 is the bad guy in most oropharyngeal cancers. While some studies have found 18 in very small numbers, researchers with the highest experience think that this is an "artifact" more than a cause. This means that it was along for the ride but not the active agent, or even an anomaly in the testing process, as the numbers are so small. 18 is a big deal in cervical.

Thanks to everyone for responding. I am going to read the articles suggested to me before I ask any additional questions. My husband has been very open about HPV with his friends, co-workers and family. I have told my family and our children only. I am not concerned that people might know who I am. It is not about me. I didn't want my son to read the following and jump to the wrong conclusion. He had a spot on his tongue for a year but I think much longer. The dentist said that he had never seen anything like that before. He referred him to a general surgical center. The surgeon said that he had never seen anything like it either but he removed it and the biopsy was negative for cancer. That was about 2 years ago and my concern was that my son would read this forum and panic. He is relatively young. I didn't know about OC in men by HPV or I would have had his surgery done by an ENT and I would have asked questions. It ticks me off that the dentist sent us to a general surgeon and I don't think the biopsy checked for HPV at all.

I am not anti-vaccine. My sons girlfriend had the vaccine series a couple of years ago. I think he will have the vaccine and it won't be a problem. It was a Hematologist (in a satellite office of my husbands Oncologist) that made the promiscuous remark about the vaccine. I thought it was ridiculous advice to give a patient. I just wanted him to tell me if it is possible that my blood test issues (over 9 months with no known cause) could possibly be due to HPV. The pap smears have not tested positive but men don't have Pap Smears so what does that mean to a woman?

I haven't read that you can pass the HPV virus to an infant thru childbirth or that a child would develop HPV in a normal childhood. I have not read thru the articles yet that were listed in this thread. I did research this months ago ONLY because my son asked if we passed HPV on to him. I thought it was highly unlikely but I did research it and what I read at that time said it was extremely unlikely. One article listed 'theoretically' how it could happen but the hypothetical items were so unlikely that it was close to laughable. I am not a doctor tho and I haven't read these additional articles.

I believe that a mother can pass HPV on at childbirth resulting in Recurrent respiratory papillomatosis (RRP).

Not at all sure what you mean when you said "or that a child would develop HPV in a NORMAL CHILDHOOD". ANY sexual activity can pass the virus even heavy or French kissing. I think I was NORMAL and I started kissing in the 5th grade.

Now, see, that is so sensible. Kissing never even crossed my mind as a vector. Then again, I only had one boyfriend before my husband. And to think people teased because I wasn't interested in casual dating. Then again, I still ended up here. . .

Thank you for the perspective. I have been hating the worry and guilt trip about what I could've done to get this, and you just squashed that in one word. I am really grateful.

Kristen
(somehow the post sounds sarcastic but I genuinely mean that you lifted a load off my mind!)

David, I should not have said childhood. I was specifically trying to find out if I could have passed HPV16 on during childbirth. One article said that HPV16 could possibly be passed if a parent with HPV16 would either masturbate/engage in similar sexual foreplay then immediately went and changed a diaper without first washing their hands. They said it was highly unlikely but possible. It seemed unlikely to me too for many reasons.

As far as I know anyone at any age that engages in sexual activity can acquire any sexually transmitted virus.

There is plenty that I don't understand about HPV but I believe in the vaccine. I want my kids to have the vaccines now.

I still need to read the suggested articles but I should have been clearer in my language and how I say things. I completely disagree with Michele Bachmann and my Hematologists remarks. I hold a very different set of beliefs than those 2 people.

Hi Stacey

HPV is also found as part of the normal childhood development. so you were right the first time

I have found a brilliant FAQ sheet from the American Cancer Society about HPV, cancer and vaccines that should answer all your questions

http://www.cancer.org/acs/groups/cid/documents/webcontent/002780-pdf.pdf

The summary below is taken directly from the sheet and answers as many of your questions as I could remember

HPV is short for human papilloma virus and comprise a group of more than 150 related viruses which ar distinguished from each other by their type. So HPV-16 is human papilloma virus, type 16.

About 75% of all HPVs cause warts on the skin. This might be what you referred to as developing in a normal childhood. I had one as a kid on my index finger for a couple of years and eventually my mother put something on it that turned it black before it finally fell out leaving a crater for a couple of months. These warts are common in kids and are not sexually transmitted.

The other 25% are called mucosal HPVs and are mostly sexually transmitted. They are called mucosal because they are attracted to and grow in the moist skin areas such as vagina, anus, oral cavity etc.

HPV-16 is a mucosal HPV and is sexually transmitted.

As you have already found out, it is possible for a mother to pass HPV onto their newborn ( vertical transmission). According to the faq sheet, it is rare.

The sexually transmitted kind of HPV is also very common and over 14 million people get a new HPV infection every year, approximately half of whom will be in the 15-24 age group.

Nearly all sexually active men and women get HPV at some point in their lives. Most don't know they have/had it.

In the US, you can get the HPV vaccine for both females and males and it is approved from the age of 9 up to the age of 26. I do not know if it is covered by your health insurers though. It is best to get the vaccine before the person becomes sexually active as this is when it works best.

I would recommend that you read the whole sheet a there is a wealth of information and there aren't many questions that it doesn't answer

A new study shows that vaccinating teen girls against HPV has led to a 56 percent decline in cases among young women.

It's interesting that while the rest of the first world is approaching a herd immunity in HPV related protection from cancer, the US is way behind everyone because of the anti vaccine groups using the Internet to spread essentially fear and misinformation.

Here is an article looking at why parent choose not to vaccinate.

http://pediatrics.aappublications.org/content/early/2013/03/12/peds.2012-2384.full.pdf+html

Karen, Thank you. The fact sheet did help with many of my questions.

I did a basic Google search just to figure out if Ohio Insurance would cover the vaccine but I won't go into that here. It appears to be a challenge for some states to even pass out educational HPV brochures.