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Joined: Mar 2002
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The NCCN treatment guidelines for H&N cancers have just been updated and we will have them on the web site in about 5 days when they are fully made public. However OFC's constant HPV driver to have more people tested will be glad to hear that the new guidelines from the big guys recommend that all posterior OC be tested for HPV16. Here's a quote for the news release, not the actual guidelines.

One of the main changes is a new "suggestion" that the workup for cancer of the oropharynx include testing of the tumor for human papillomavirus (HPV).

"Immunohistochemical testing for HPV p16 is recommended," said David G. Pfister, MD, from Memorial Sloan-Kettering Cancer Center in New York City, and chair of the NCCN Head and Neck Cancers Guidelines Committee. "Although not used to guide treatment, HPV testing is valuable prognostically. The results should not change management decisions," he emphasized.

HPV-related oropharyngeal cancer appears to be a new and distinct disease entity, and is associated with better survival than non-HPV head and neck cancers, Dr. Pfister noted.

HPV Has a Clear Impact on Prognosis

"Our understanding of the human papillomavirus as a risk factor for head and neck cancer has evolved. Now we see that it has a clear impact on prognosis," Dr. Pfister said in an interview with Medscape Medical News.

Because of their improved prognosis, these patients might require different treatment, he said. "There is a great interest in better understanding HPV-related cancers and how we treat the disease down the road. Right now we have insufficient data to change how we treat these patients, but clinical trials are being designed to assess the optimal treatment for this group."

The incidence of HPV-related oropharyngeal cancer has increased noticeably in recent years. In one study, conducted in Sweden, researchers found a progressive proportional increase in HPV detected in biopsies taken to diagnose oropharyngeal cancer, from 23.3% in the 1970s, to 29% in the 1980s, 57% in the 1990s, 68% in 2000 to 2002, 77% in 2003 to 2205, and 93% in 2006 and 2007 (Int J Cancer. 2009:125:362-366).


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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Not just David. My radiation oncologist who was "bullied" into testing my Alex can now sit back on his laurels as being in the forefront of current thinking. After Alex, he asked for half a dozen other patients to be tested resulting in a very steep learning curve for our Cancer Co-Ordinator smile

I can't wait for the news releases to filter down under, where I will pick them up, send them through to our RO and congratulate him for his foresight. Hopefully this will encourage the continuation of his new behaviour!!! I will also take some credit as I rise in goddess status with my Alex for pushing this cause so hard in the face of absolute negativity and at times, out and out derision.

Well done DavidCPA and OCF - I know how hard this is/has been.

Karen
PS our regulatory authority (TGA) changed the indication for Gardasil (HPV vaccine) to include boys in November 2010. Now all we have to do is get it on the free list using a gender equality argument. Also thanks to DavidCPA who helped in private conversations with some background and ideas last year.


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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I am not a numbers person. But who can ignore the progression of HPV+ thru recent years. WOW! That is an excellent reason to vaccinate both girl and boys.

Great job with activism, Karen!!!


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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I've been asking for a year now and my docs finally caved in this last visit and will test my path slides for HPV, I'll be sure to let you in on the results. The doc didn't seem to think that it would show + as she said it's usually only in squamous cell but you never know.


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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Even though it took 4 plus years to get some movement from the medical profession that's a piece of cake compared to getting the IRS to budge from ANY position they take!

All kidding aside this will be a HUGE step in the continuing education, recognition and understanding of this virus and may eventually lead to the male Gardasil vaccination being recommended by the CDC for the prevention of Oral Cancers.


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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I have an appointment with my Oncologist the 15th and I am gonna see if he will retest me for HPV. 3 of them have said it isn't but it's a possibilty they missed something.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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I'm going to start radiation and chemo at Mass General this Monday. Any suggestions on how I should approach my "teem" about a kinder gentler machine gun hand when it comes to the rads because of all this new info.


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
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Another really interesting article was posted today on OCF. It caught my eye as it dicusses the greatly increase incidence of cancer of the oral tongue in females, and they are not sure of the cause as it doesn't seem to be HPV related.I have often wondered myself about what caused my cancer, as well as so many other women on this site.

Here's a quote: "between 1975 and 2007, the overall incidence for all ages, genders, and races of the disease was decreasing. However, the incidence of oral tongue squamous cell carcinoma rose 28 percent among individuals ages 18 to 44. Specifically, among white individuals ages 18 to 44 the incidence increased 67 percent. The increasing incidence was most dramatic for white females ages 18 to 44. They had a percentage change of 111 percent." and �Our findings suggest that the epidemiology of this cancer in young white females may be unique and that the causative factors may be things other than tobacco and alcohol abuse. Based on our observations and the published data, it appears that these cases may not be associated with the human papilloma virus. We are actively researching other causes of this cancer in this patient population.�

Link to full article:

http://oralcancernews.org/wp/increa...in-young-white-women-age-18-to-44-years/

Last edited by Brian Hill; 03-12-2011 10:10 PM. Reason: fix link

Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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An update from down under. After an expansion of indication by our regulatory authorities which allows vaccination against HPV for boys, there is a front page article about it in the local newsletter provided by Alex's (and Gabe's) primary practitioner. Very exciting. Oral cancer and the role HPV has to play gets its own paragraph. Even more exciting! Well meaning but entirely ignorant general practitioner now gets to read all about the thing I have been banging on about for the last 12 months in his own newsletter! Poetic justice!!!

But there's more ..,

Last Thursday, I was sitting at the dentist waiting my turn when the rep showed up expounding the virtues of mouthwash to the dental assistant. Being the person I am and refusing to let a chance go by, I butted in and asked if there was an update around the controversy with alcohol in mouthwashes being causative for cancer? She started rattling on that there was no link between alcohol and oral cancer to which I replied that before she went any further, that my Love of Life had just gone through hell with oral cancer and alcohol was definitely implicated although not necessarily from mouthwashes. She said she would look into it and get back to me. During this exchange, the dental assistant was watching the exchange goggle-eyed and after the rep left asked about my Alex. After discovery that she had a boy, I managed to give her a fast education about oral cancer including the link to HPV and the vaccination available and gave her my copy of the newsletter. I know she will talk to the dentist who is one of the few who are diligent in checking the state of the mouth for abnormalities (as well as charging like a wounded bull for making me and my teeth "pretty"). I am hoping this will open the door for a discussion with my dentist and I can dump a years worth of research and discussions at her feet. She is absolutely in the best position to talk to her patients about this if sufficiently fired up. At the very least there may be one boy in Australia about to get a course of HPV vaccinations.

One step at a time...


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
Joined: Sep 2006
Posts: 8,311
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Yep, one step at a time.


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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