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#149462 - 05/12/12 12:48 PM SCC & HPV Vaccine
AnaD Offline
Senior Member (100+ posts)

Registered: 05/11/12
Posts: 161
Loc: Illinois
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; Completed tx 9/12; Just completed 18 mo scans, completely clear, thank God.

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#149463 - 05/12/12 12:51 PM Re: SCC & HPV Vaccine [Re: AnaD]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8464
Loc: PA
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, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#149464 - 05/12/12 01:04 PM Re: SCC & HPV Vaccine [Re: ChristineB]
AnaD Offline
Senior Member (100+ posts)

Registered: 05/11/12
Posts: 161
Loc: Illinois
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; Completed tx 9/12; Just completed 18 mo scans, completely clear, thank God.

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#149465 - 05/12/12 01:58 PM Re: SCC & HPV Vaccine [Re: AnaD]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8464
Loc: PA
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, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#149469 - 05/12/12 02:51 PM Re: SCC & HPV Vaccine [Re: ChristineB]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8309
Loc: Gulfport, Florida
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#149472 - 05/12/12 03:36 PM Re: SCC & HPV Vaccine [Re: davidcpa]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4678
Loc: Laguna Niguel, CA
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.

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#149480 - 05/12/12 09:38 PM Re: SCC & HPV Vaccine [Re: Brian Hill]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
_________________________
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

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#149483 - 05/12/12 10:22 PM Re: SCC & HPV Vaccine [Re: klo]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4678
Loc: Laguna Niguel, CA
_________________________
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.

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#149503 - 05/13/12 06:00 PM Re: SCC & HPV Vaccine [Re: Brian Hill]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 873
Loc: Ohio
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.


Edited by Maria (05/13/12 06:03 PM)
_________________________
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, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#149507 - 05/13/12 09:02 PM Re: SCC & HPV Vaccine [Re: Maria]
AnaD Offline
Senior Member (100+ posts)

Registered: 05/11/12
Posts: 161
Loc: Illinois
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.


Edited by AnaD (05/13/12 09:03 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; Completed tx 9/12; Just completed 18 mo scans, completely clear, thank God.

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