Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#149462 05-12-2012 05:48 AM
Joined: May 2012
Posts: 162
Likes: 1
AnaD Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 162
Likes: 1
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.


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
AnaD #149463 05-12-2012 05:51 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
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


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2012
Posts: 162
Likes: 1
AnaD Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 162
Likes: 1
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.


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
AnaD #149465 05-12-2012 06:58 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
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!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
No doubt in my mind. Get the vaccines for all.


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 #149472 05-12-2012 08:36 AM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
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.


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: May 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
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.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #149483 05-12-2012 03:22 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
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.


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: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
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.

Last edited by Maria; 05-13-2012 11:03 AM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #149507 05-13-2012 02:02 PM
Joined: May 2012
Posts: 162
Likes: 1
AnaD Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: May 2012
Posts: 162
Likes: 1
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.

Last edited by AnaD; 05-13-2012 02:03 PM.

wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5