| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | The Gardasil series of shots are available to young men and women ages 12-26. The younger the better! By getting the shots prior to becoming sexually active they will be protecting the person from the strains of HPV which causes genital warts, anal cancer, ovarian cancer and oral cancer. As far as I know, the majority of adults already have been exposed to HPV at one point or another. The jury is still out on how easily HPV gets passed around (doorknobs, toilet seats, very causal contact like shaking hands, etc). While many adult have been HPV+ at one point or another, most can clear this and have no ill effects while a small percentage cant clear the HPV and it will go on to cause them serious health problems.
Last edited by Brian Hill; 06-07-2013 03:47 PM.
ChristineSCC 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 | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Just a bit of clarification on Christine's post which is mostly correct. The transfer of the virus requires a pretty robust skin to skin contact. There is no evidence that you can get it from inanimate objects like doorknobs, as it cannot live outside of a cell for very long. Skin to skin transfer of HPV is common especially in very young children who get non-cancer causing varieties very early in life from other kids. The 9 known cancer causing types (there are an additional 6 that are suspicious for causing cancer) are not transferred that easily, and in oropharyngeal cancers we are really only worried about one in particular number 16, which is covered by the vaccine. The vast majority of sexually active Americans will have HPV at some point in their lifetimes, the good news is that in 99% of them their immune system will recognize it as a threat, and in less than two years clear the infection and leave a protective antibody behind. I am part of the lucky 1% that will get a cancer from it. Michelle Ann - oncologists are definitely not virologists or even close to epidemiologists, who understand this the best. So most of us do not get good HPV information from the oncology world, but that is starting to change as this becomes a more common cause of our disease. The oncology treatment world can be kinda cavalier about learning something new when at this point in time it does not create changes in the treatment protocols. HPV+ or not, people currently get the same stuff. But in the next few years that may be changing as the HPV+ people enjoy about a 30% survival advantage, and perhaps some of the radiation or chemo can be dialed back with the same clinical end results. Of course before anyone does that, the FDA has to approve a protocol and trials have to be done.
Last edited by Brian Hill; 06-08-2013 09:01 PM.
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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks Brian, Hot topic now!
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
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Michelle Ann, No she was never tested as a result of my HPV finding but she had/has never had any positive pap smears. I was dx'ed 7 years ago and believe me compared to today that was the Dark Ages of HPV+ SCC. Despite the fact that I didn't present myself as a typical OC patient even Moffitt responded to my repeated questions of how did I get OC with "What difference does it make, you have the cancer and there's only one way to treat it so let's move forward." R U kidding me????? Of course it made a difference to me.... It was not until post Tx that I learned of a Dr at Johns Hopkins (Dr Maura Gillison)that was exploring a connection between HPV and oral cancer in people that fit a particular profile. I called her and spoke to her and she asked me to send my cancer slides to her. I did and her findings were positive for HPV16. Since then it has been my mission to inform everyone that will listen, especially men about HPV. Back then the ONLY information being put out about HPV targeted females and was about cervical cancer. I took my story to the newspaper; to radio; to TV; Moffitt asked me to co teach an annual 1/2 day workshop on HPV+ SCC to oral cancer docs; I testified before the Florida House in support of a bill that would have required girls entering the 5th grade to get the Gardasil vaccination (didn't pass) and I testified before the CDC as a spokesperson for the OCF in support of giving the CDC's highest recommendation for the male version of the Gardasil vaccine. I even talked so much about HPV on this site after I found out my cancer tested positive for HPV that it created a lot of animosity and I almost left the site. Remember back then the ONLY OC cause discussed on this site was tobacco. We've come a long way baby....
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.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | That's awesome you called Dr. Gillison. There is a recent study from Mt. Sinai School of Medicine (my hosp), which may posted here in HNC News, elsewhere, that long term partners of oral HPV cancer patients have no significant risk of oral HPV. "In the first study of its kind, researchers including Marshall Posner, MD, Medical Director of the Head and Neck Medical Oncology Program at Mount Sinai, sought to determine the prevalence of the human papillomavirus ( HPV) in spouses of people with HPV-positive throat cancer, which is derived from the strain of HPV known as HPV16. They evaluated the viral load of 83 couples in which one partner had an HPV16-positive throat cancer, using a novel oral rinse and gargle test. They found that 54 percent of people with HPV16-positive throat cancer had evidence of HPV16, the strain associated with this type of cancer, at diagnosis, and six percent had it after a year, despite treatment. In their long-term partners, prevalence of any HPV was five percent in female partners of men with HPV16-positive throat cancer and 29 percent in male partners of women with HPV-positive throat cancer-findings that are comparable to the general population. "Recent research suggests that husbands of women with cervical cancer are at greater risk for a future HPV16 positive throat cancer, and patients with throat cancer have expressed reasonable concerns about infecting their spouses with the virus," said Dr. Posner. "Ours is the first trial to evaluate the prevalence of HPV in long-term partners of people with throat cancer, and the findings should reassure those in long-term relationships that their risk is very low."
Last edited by PaulB; 06-10-2013 07:08 AM. Reason: quote
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
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | people who read the OCF news section or subscribe to it for free got this story on June 1st http://oralcancernews.org/wp/no-inc...of-people-with-hpv-related-oral-cancers/
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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks, Brian. have to see if I subscribed already, I don't think so since I had a hard time with iPad, as usual, not being techy, but have to do it with the laptop.
Last edited by PaulB; 06-10-2013 08:43 AM. Reason: iPad
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
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Dr. Gillison also evaluated my tumor for HPV. She was gathering data "way back" as you say David and I got mine into the database. I am not sure if it was her or her colleague that used me as a case study on managing long term radiation issues by illustrating the damage that surfaces later in some patients. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Just some clarity around Paul�s post taken directly from the abstract of the study itself which was presented at ASCO 2013 a couple of weeks ago. ASCO is the main American Oncology meeting. For those who also like the data, the link to the original work is below. http://meetinglibrary.asco.org/content/111185-132Summary of the figures The study looked at 149 patients with oropharyngeal cancer and 81 partners. Of the patients, 65% returned positive results ANY HPV and 52% for HPV 16 (which is the one we are most interested in) at diagnosis. Of the 81 spouses, 7.3% had ANY HPV and 2 with HPV 16 (approx 2.5% by my calculation but not included in the abstract). The abstract results tell us that one year later, 103 patients and 46 partners were followed up. Of the 52 patients with HPV 16 diagnosed at begining of therapy, 4 still had evidence of persisting infection. That�s less than 4% for the total group and 7.7% of those who had HPV 16 in the first place. Of the 46 partners who were followed up, 2 (both female) had previously returned positive results for HPV 16 and appeared to have cleared the infection. There was also an update on the same study presented during one of the lectures and the figures were updated to 166 patients and 94 partners with follow up of 115 patients and 51 partners 12 months later. The outcomes remain more or less the same.
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 Still underweight
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Since a small % of those infected with HPV 16 still had the infection post tx and 1 year later was there any discussion of why or how. Brian and others have said that the body creates antibodies once infected that prevents future infections so if that's the case then what can explain their findings?
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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