Posted By: AnaD SCC & HPV Vaccine - 05-12-2012 12:48 PM
Good morning folks, I have a question that I'm almost scared to ask, do not want to start a controversy...but am wondering if others are struggling with this issue. Since my husband's diagnosis last month, the HPV vaccine has been on my mind, a lot. We have two boys, 17 and 12 years old, both currently unvaccinated. A bit of history, both have complicated neurologic histories, including for the younger one developing severe epilepsy 5 days after his first (and only) MMR vaccine. Nobody can ever prove if there was a correlation or not, but his neurologist recommended that he not recieve the rest in that series. He has since outgrown epilepsy, which for us was the equivilant of winning the lottery.

We've heard the horror stories of reactions to the HPV vaccine. We're also well aware that the children being vaccinated are basically in the first wave, they're still figuring out the long term affects and affectivness. We also know the HPV vaccine only protects them from 4 of the 100 strains...but HPV #16 is one of those 4.

I just look at my dear, handsome husband, who has so bravely joined this battle for his life, and wonder.....do we risk giving our boys the vaccine and possible triggering epilepsy again, in order to avoid this fate in their future?? 80% of the adult population carries HPV, and most never develop SCC, is there something in our genes to make this more likely?

I do not mean to start a huge pro/anti immunization discussion, there are most certainly passionate feelings on both sides. I just wonder if any other families have dealt with this dilema with their children & HPV (vaccine & SCC cause), what went into their decision process. It's an extremely tough choice, almost as if you're damned if you do and your damned if you don't.
Posted By: ChristineB Re: SCC & HPV Vaccine - 05-12-2012 12:51 PM
My daughter is vaccinated and my son has begun the series. In my opinion, the benefits far outweigh the risks.

Here is some more detailed HPV info from the main OCF pages.
The HPV Connection
Posted By: AnaD Re: SCC & HPV Vaccine - 05-12-2012 01:04 PM
Thank you Christine, the link you posted was interesting, some good information to consider. The extremely tough part for us comes from our son's MMR/epilepsy history. As terrifying as SCC is to deal with, epilepsy was no cake walk. Our son also had drop attacks that would come on suddenly, bouncing his head off the concrete. I couldn't help but wonder how many times that could happen before one day it would crack his head open. I will never forget holding my toddler through uncontrollable grand mal seizures and feeling horrible for having given him the MMR shot to protect him. So now, we are on the horns of the dilema, do we risk the return of the monster that is full blown epilepsy...or the monster that is SCC BOT cancer. Not an easy choice.
Posted By: ChristineB Re: SCC & HPV Vaccine - 05-12-2012 01:58 PM
I would suggest speaking to your son's pediatrician, or family doctor before making this decision. Given his history, it is a very serious decision. Ive seen people who live with epilepsy and its not easy at all. You are doing the right thing by being cautious!
Posted By: davidcpa Re: SCC & HPV Vaccine - 05-12-2012 02:51 PM
No doubt in my mind. Get the vaccines for all.
Posted By: Brian Hill Re: SCC & HPV Vaccine - 05-12-2012 03:36 PM
As a proponent of vaccination I am all about vaccinating our kids. With a 225% increase in HPV caused oral cancers since the late 1980's, this thing is running out of control and the numbers are actually going to be staggering when our grandchildren are of sexual age.

Having said all that, I think give a history of neurological issues, that before you give your children ANY vaccine, you should make a joint decision with your pediatrician, and ideally speak to another doctor that has history with this one in particular. If you need assistance making that decision ( of which an unknown factor will always exist even with the best information) I perhaps can introduce you to someone from the Merck research team that knows more about it than you average doctors.

A familial genetic transfer for susceptibility to get oral SCC is not known to exist, and as it relates to HPV positive disease, this is clearly a life experience exposure causality. So while your husbands experience in this situation is no indicator of what will happen to your children, they will one day become sexually active and in all likelihood they will come in contact with the virus. For 99.1 percent of all Americans that is a non issue. Their immune systems will clear HPV16 and they will never even know that they were infected. But for that last almost 1 % there is no way of knowing who they are, and the cascade into a malignancy is a reality. The only choice for them is the vaccine.

But think about the math, think about underlying issues your children have manifested, and make an educated decision. They are all unique biological entities, and how any vaccine or any medicine impacts them is also a unique biological outcome to some extent. Do not believe the Internet nonsense about people dying form these vaccinations, there has not been a documentable issue like that with it, but the anti-vaccine movement and their misinformation is hard at work in the US. They are too young to remember when smallpox or polio were major killers of thousands a year in the US. The last case of small pox was in 1949, and it was controlled through a vaccine.
Posted By: klo Re: SCC & HPV Vaccine - 05-12-2012 09:38 PM
I too have heard the horror stories but never from sources that I would describe as trustworthy (sorry guys, facebook is not a place to go to get credible evidence). One bad experience, repeated often enough becomes hundreds and bears no resemblence to the reality.

The following figures have been taken directly from the Centre for Diseases Control (CDC) website and relate ONLY to Gardasil not the other vaccine which is not as commonly used in the US. You have a reporting system in the US called Vaccination Adverse Event Reporting System (VAERS) from which I have taken the figures below.

As of September 15 2011, 40 million vaccines had been distributed. Total number of reports of adverse events reported is 20,096. The majority of events reported are not serious and include pain and swelling at injection site, dizziness, fever, nausea and fainting. 8% of the 20,096 events were classified as serious. �Serious� is defined as requiring hospitalisation, is life threatening or results in death.

The CDC received 71, reports of death 34 of which are confirmed. The other 37 could not be confirmed due to lack of information such as patient names in order to follow up.

Of the deaths that could be confirmed (and I will quote the CDC here) �there was no unusual pattern or clustering to the deaths that would suggest that they were caused by the vaccine and some reports indicated a cause of death unrelated to vaccination�.

In numbers, 8% of 20,096 events is 1,608 (my calculation). If we assume 20 million doses have actually been adminstered (the other half still languishing on a shelf somewhere) this is less than a .001% chance of a serious event (my calculation).

There are two considerations to keep in mind when with respect to these figures. Adverse events are often not reported but reported adverse events don�t necessarily have anything to do with the drug.

I also appreciate that these figures would mean nothing if it was your child who was that one in a million who suffered a serious event that might cause you to regret a decision to vaccinate. You are clearly considering this connundrum carefully and whatever you decide, will be for the good of your family. No one will disparage you for that (and if they do, cross them off your Christmas list ;)).

I am pro-vaccination myself, worked in a hospital for people with developmental disabilites for 10 years, some of whom were there because they contracted a disease that caused their mental incapacity (my recollection is mostly meningitis due measles) and one who was there reportedly because of a reaction to the vaccine. I currently work in the pharmaceutical industry and reject the concept that �big pharma� puts profits above the health of people. Besides the obvious ethical considerations, it is actually very poor business practice to have a drug that doesn�t work. Pharma is made up of people with mothers, brothers and children too, and have the same ethics and concerns as everyone else.
Posted By: Brian Hill Re: SCC & HPV Vaccine - 05-12-2012 10:22 PM
The important point here is to make a comparison. If you took a similar representative sample of a non vaccinated group of individuals, (by gender, age, etc.) and looked at that group for death for instance, the death rate in that group from unknown causes is a dead heat for incidence with deaths in the vaccinated group. Take a look at the Matthew Herper Forbes stories in the OCF news feed about all this. His reporting on this issue makes it very clear.

Relative risk, when compared to other things in life is very low. But nothing is ever zero. So now you compare it to things that might just as likely happen to you, for instance driving on the freeway. What of your odds of being killed there?

You cannot live life in a protective bubble, and every choice you make from driving to the store, to getting a vaccination, has a relative risk/reward ratio to it. The problem with the way that the average non science based person thinks is that they generally believe that bad things like auto fatalities always happen to someone else� until reality changes their minds.

As someone that considers evidence based decision making part of his life, I would get vaccinated. But I am notorious for looking for bias in peoples opinions and scientific articles alike. Too often it is the key error in anyone's decision making.
Posted By: Maria Re: SCC & HPV Vaccine - 05-13-2012 06:00 PM
Another factor to consider is that HPV+ cancer patients/survivors (oropharygeal or cervical) have demonstrated their inability to clear the HPV infection without drama. In my son's case, both his parents proved themselves incompetant to clear the virus effectively - cervical carcinoma in situ for me, tonsil cancer for my husband, Genetics? Maybe, maybe not, but my young adult son has had his first two vaccinations with his third scheduled for this fall. I suggested the vaccinations, he did his own research and agreed.

Another factor to consider in public health issues that that vaccines (at whatever risk) protect the individual vaccinated and those the he/she comes in contect with. Vaccinating boys may protect them from oral cancer, and may also protect their partners, and their partner's partners down the road.

My best wishes, Ana, on your husbands treatment and on your decision regarding vaccinating your sons. Not an easily choice to make. You've probably got some time to think about it with your younger son, at least.
Posted By: AnaD Re: SCC & HPV Vaccine - 05-13-2012 09:02 PM
Thank you all for the comments and support. Lots to think about. Brian, yes, I would love to visit with your Merck connection. I also plan on touching base with my son's neurologist about doing the immunization at all, and about adjusting the schedule if we choose to do it. Maria, we too wonder about a genetic component to this. Eighty percent of the adult population is exposed to HPV, why does it manifest to SCC in some...is there a genetic predisposition? The decision to immunize our older son is easier, he hasn't had as many neurolgic issues. It's the younger son that's much more complicated. Thank goodness he's only 12, we still have some time to sort this out...after we get through my husband's treatment this summer.
Posted By: Brian Hill Re: SCC & HPV Vaccine - 05-14-2012 01:13 AM
Anna makes a good point about the protection of others. There are two distinct issues, men are of course vectors of the virus to women, and as such even in the cervical cancer model we need to protect them. But in the long run, as with diseases that we are protected against in this country, there is the issue of herd immunity. When enough of a population are protected, the remaining unprotected are as well. The disease really can't get a serious foothold.

I did not mean to insinuate that there are no genetic components to HPV+ SCC. Indeed, in all cancers, they are in the final analysis genetic aberrations as a disease, cascading into a mutated cell, and certainly in many that we know of there is a familial genetic trait that provides susceptibility, or conversely protection. For those of us here that are of white anglo-saxon backgrounds we are all decedents of Europeans that survived the black plague. A disease that there was no medicine nor cure for, and decimated huge populations. As a malady with no treatment or cure, the survivors of that plague had some genetic protection from the disease. Those survivors are the gene pool that colonized the Americas, and their gene pool in the broadest sense of the genetic map, is the basis of ours. We are unlikely to ever get the black plague as a result (were it still a threat today).

One irony of this is that evolution is at its basis occuring on a genetic level, small incremental change by small incremental change. That which protects you a hundred years ago, is something that may make you vulnerable to a new threat today. And so it is with the protection from black plague. Only through a lens which allows vision of very distant changes, are we able to see the results in an entire species, of what are in any singular individual, seemingly innocuous genetic changes.

Living to old age (not considering accidents), defying death from a cause that brings others down like cancer, though you smoke for a life time, all reveal a genetic predisposition for protection from the negative, and a greater likelihood of your progeny being part of the genetic map that exists a hundred years, or many generations from now.

So while we cannot tie oral cancers directly to a particular genetic aberration today, there is no question that some are predisposed to get cancer� of all types.
Posted By: davidcpa Re: SCC & HPV Vaccine - 05-14-2012 12:55 PM
Also remeber that in our lifetime we are (can be) reinfected with HPV and we may clear it multiple times but may not all the time. As we have stated many times there is more about HPV that we don't know than we do but with the little that we do know I wouldn't hesitate in the least to get the vaccine myself or advise my kids to do the same if we were say "in the market".
Posted By: Maria Re: SCC & HPV Vaccine - 06-08-2012 06:50 PM
Matted Notes from the OCF Feed: http://oralcancernews.org/wp/new-me...throat-cancer-to-other-body-parts-found/

Brand new study, 78 participants (not 60) but still small. Nobody freak out.

Will find the reference with the staging proposition after work. Have a meeting play nice kids, we're all on th same side.
Posted By: Charm2017 Re: SCC & HPV Vaccine - 06-08-2012 07:37 PM
The matted nodes study reported in OCF news came out on January 13th of this year online in the Head & Neck Journal not some sleazy columnist( so it's not old nor questionable). So far all I've been able to get online is the abstract of the study
Matted lymph nodes
I had a hard time understanding what a matted lymph node was from the descriptions in the abstract and news story until I found these pictures of CT scans showing matted/non matted
Pix of matted lymph nodes
Charm
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