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PaulB Offline OP
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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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.


Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13


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

I can't link the page.


Last edited by PaulB; 06-16-2013 05:10 AM.

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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[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.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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PaulB Offline OP
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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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

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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.


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
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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


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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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,


Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
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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


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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