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#140039 09-15-2011 04:17 PM
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For those of you who may not have seen this ... the first report on tonight's "NBC Nightly News with Brian Williams" is on the rise of HPV-related head and neck cancers, pegged to the current kerfluffle over Texas Gov. Rick Perry and his short-lived HPV vaccination mandate (and Rep. Michele Bachmann's very odd remarks about mental retardation and the vaccine). The reporter is NBC's chief medical editor, Dr. Nancy Snyderman, who is a head and neck surgeon.

You can see the report on the "Nightly News" website: http://www.msnbc.msn.com/id/3032619/


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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Leslie, thanks for posting this! I loved how they promoted the vaccine to protect children from ever having to go thru OC.


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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Very good presentation, even though my oral cancer wasn't HPV related.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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This may be the first time many people will have learned of the connection between OC and HPV. Millions of people watch national news. Great feature.


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Well done. It certainly helps to have this on national news with Brian Willaims. I plan on sharing this leak with my friends and family.

Thanks for posting it on the forum!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Thanks for sharing this Leslie.
It is so easy to understand for those not aware of oral cancer or for people that think it is an older person�s disease.
It has to raise alarm bells for the rise of HPV related OC in the younger generation or for all parents who have seen this report.


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Shame on every major network out there. Making viewers think this is something new. I and the OCF have been on the mission to advocate and educate about HPV and the vaccine for over 5 years now and I literally begged all the majors to do something like this that long ago. I have been only able to get local coverage. I also testified before the Florida House on a similar vaccination bill for girls entering the 9th grade but it was also dismissed along political lines. I also testified before the CDC on behalf of the OCF also to no avail.

Think about all the children that could have gotten the vaccine that didn't that are at risk now because of everyone looking the other way.

Also the CDC DID NOT AND DOES NOT endorse this vaccine for the prevention of Oral Cancer, only against cervical cancer and genital warts. It angers me that they were mentioned and associated with this HPV issue when they also turned their back on pure logic.

Just my 2 cents.


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.
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David - please add to your list anal cancer, that it is FDA approved for the prevention of. This came after the fact, as they had a portion of their original clinical trial that involved individuals with this disease done in the Caribbean. It was added last year as an approved disease.

What the manufacturer and the FDA/CDC can't do, which is state something that the clinical trials did not investigate (oral cancer) as being a fact, is being talked about a great deal by the scientific community and the medical community. Right now with no NEW clinical trial for this on the horizon, public comment, with the support of respected researchers and scientists from the medical world, along with constant pressure form others like the OCF, are what is creating all this dialog. We have to keep it up.

There isn't a media person that I talk to that I do not bring this up to. If you can't get the virus, you can't get things the virus might have caused. This is not a huge scientific leap. The protection against HPV16 now has almost 9 years of recorded clinical evidence of 100% coverage of young girls that got the shot. (about 24 million) A recent article in the OCF news feed looked at this and it may be that a single or two shot regime would have the same outcome given the data we have today. (The original prescribed shot regime was 3 shots over several years)

http://www.medicalnewstoday.com/articles/233147.php

Last edited by Brian Hill; 09-17-2011 07:41 AM. Reason: add reference link to anal cancer. Dr Kramer quoted at the NCI is on the OCF board.

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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This link goes directly to the "Nightly News" HPV video: http://www.msnbc.msn.com/id/3032619/#44542589


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.
Joined: Jun 2007
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On the Guardisil shot's website they only list vaginal, vulvar and cervical cancer as cancers caused by HPV. I hope to see oral cancer on that list one day.

I had my daughter immunized with the Guardisil shot about 3 years ago. I seem to remember she was given the doses every 3 months. Now the website says, the second dose is given 2 months after the first one and the third dose 6 months later.

http://www.gardasil.com/

Last edited by ChristineB; 09-17-2011 11:00 AM.

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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