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#176729 01-20-2014 08:00 AM
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n74tg Offline OP
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Does anyone know if after HPV-16 positive diagnosis and then radiation or radiation and chemo treatment for oral cancer, if we should in reality expect the virus is still in our bodies and subject to being transmited via kissing or other sexual contact.

I've heard lots of opinions in other peoples threads. It seems it would be better for all of us if we could get all that information here in one thread.

I would be interested in this thread becoming the definitive thread for discussion of HPV-16 on this forum.

Likewise I would like to see any URL references to published studies on the subject.

I know this forum is about oral cancer and it's treatment, and not a forum about getting our love life back on track after treatment. But since I expect this forum has the most up to date technical information about the virus on the internet , that makes it also the most appropriate place to discuss exactly this issue.

Other opinions?

thanks guys,

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

n74tg #176736 01-20-2014 10:09 AM
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I've asked about this a few times.

The answer is yes, it's still active and can still be transmitted. Talking with my MO he says most people have already been exposed by the time they are in their twenties. Contracted and cleared no additional risk from exposure.

So my wife has been exposed and has cleared the virus most likely over the years. So no need for additional precautions. I would have the discussion with anyone else to be up front.

My concern also was I have cancer from this virus so even if I remain cancer free for 5 years what is there to keep the virus from initiating a new cancer? My MO says nothing. He said I will continue to be checked regularly so if it starts new we'll find it quickly. Not comforting.

John



Oropharyngeal Cancer, SCC, HPV 16+, stage IV T1N2b age 45
Started in my tonsils and spread to my lymph nodes
Cisplatin x3 with concurrent daily radiation treatments started 10/22/13 finished 12/6/2013
n74tg #176752 01-20-2014 09:11 PM
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The topic of HPV and oral cancer are deeply intertwined and trying to corral all posts related to HPV into one thread is admirable but won't happen. Many people are not going to search for this specific thread then post in it. Also, one thread that gets loaded with hundreds of posts is almost useless from a practical point in terms of someone wading through the whole thing. Some may do that but the vast majority do not have the time. Using the search function can bring results back.

The way HPV works is most all adults who have sex have likely gotten the virus and passed it. For those who harbor the virus it may hide out for many years, even decades, then might turn into cancer.

If one is 30 something and diagnosed with HPV+ cancer and has partners of similar age, then there is more validity to informing partners about the potential risks. If one is sixty something and partners of the same vintage, then my view is why bother saying anything. At this point, many decades have come and gone and the body has passed it and immune to it, or it has rooted itself in hiding and waiting to become cancer or remain there. Nothing you do at this point is going to either make the situation better or worse.

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
n74tg #176754 01-20-2014 09:31 PM
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So there re several HPV threads running on the forum in the last month. Some are really long, and drawn out with lots of opinions and ideas. I am just going to post here on this recent short one (sorry for not being specific about the exact question asked), to make sure that those that are looking for studies know that OCF has captured with the authors permission, or they were studies that our donors sponsored portions of, and the most relevant ones are right here on our site. For sure there are others, but some have inherent bias in them, small populations, or done without proper scientific controls, and they were culled from what our science board decided to put on the OCF site. There are thousands of studies, some better than others. For those of you that want to go searching here is your starting point

Early information

http://www.oralcancerfoundation.org/facts/hpv_reports.htm

information since 2000

http://www.oralcancerfoundation.org/HPV/hpv-scientific-articles.html

Vaccine

http://www.oralcancerfoundation.org/HPV/hpv-vaccine-related-articles.html

other stuff

http://www.oralcancerfoundation.org/HPV/

All this is being updated this month. But much of this multiple thread discussion misses the point that just about every adult in the US is going to be exposed. It is impossible to know when, or by whom, since you do not know you have the virus, and you do not know that you have cleared it. (How could someone intentionally harm another through transmission, when you can't even know that you have it, and the persons that you are having sex with will likely be part of the naturally protected 99% of the population) Only about .9% of those exposed to an oncogenic HPV orally develop a cancer from it. Do the math. These are approximations;

US population, 300 million, likely 50 million too young to have sex and 50 million too old to be having sex. That leaves about 200 million people, most of whom will get the HPV virus. Out of 200 million people about 12-15k got an oral cancer from it last year. Someone do the math and tell us how many zeros come after the decimal point in that percentage to calculate what your odds are of getting this. The odds are very, very small. We are a very small, unlucky club. The good news is that we do better than people whose etiology is tobacco or an unknown cause (7%). We also have very few recurrences of an HPV etiology OSCCC. 30,000 or more people will die on US freeways in 2014. 8 thousand will die from oral cancer and not even half of those from an HPV etiology. I won't even comment on the legal discussion that has gone on. There is a lot we do not know, actually the numbers we are using today are not always accurate since reporting over the last decade has been hap hazard, even by the best hospitals who didn't even test for it in OSCC patients. Combine that with what we know, we don't know, which is vast, and much of this discussion does not have a finite answer to the questions asked in it.

To answer Tonys question, it appears that treatments do not eliminate the virus, and that post treatment we can still be HPV+. This was published by Gillison years ago. This really isn't a surprise given that the virus if it is dormant/active/dormant/active as some suspect, could be residing in an anatomical site not in the field of treatment. Herpes Simplex Virus which you get for life, lives on the ganglion of your nerves when it is dormant, and can be widely distributed. That is just one real life example, and in HPV we don't even have actual proof that it is dormant, though many good science people believe so in spite of the lack of evidence of it. (We have never found it in a dormant state anywhere.) It does account for why people that have had monogamous relationships for decades suddenly get a HPV+ cancer, but the opposite problem also exists. There have been 20 year olds with and HPV+ OSCC. Yes, there is birth canal transfer as a possibility, and that would give you a couple decades again. But none of this has any evidence pro or con.

n74tg #176760 01-21-2014 02:29 AM
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Is it possible to blood test for p16?

n74tg #176765 01-21-2014 07:46 AM
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Thankyou Brian. That sensible post was much needed.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
n74tg #176769 01-21-2014 09:17 AM
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No


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.
n74tg #176784 01-22-2014 05:37 AM
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As far as my comment made in the previous HPV postings, it was to add to the laymen's discussion in the patient/survivor forum post about one blogger's comment, n74tg, aboutthe possible law and HPV, and I did post what New York State's Law is as far as STD's as a "Ripley's believe it or not" that there is a law, and HPV may be interpeted as such, to make a lively discusssion most of which some others go dead after a few threads. Do I blieve it can or will be inforced? No. Is it possible? Maybe, and there are plenty other laws on the books one would be surpsised to learn that may be outdated, but still in the penal law.

Anyway, and just to counter the comment how one would know they are infeted with HPV-16? I'm not talking about that, and don't think the others are either nor questions were about. We are talking about sonmeone who is told they are HPV-16 positive, have cancer, and has not been treated or cancer eradicated by clear PET scan, and thinkimg about dating or a one night stand. I think there is a difference in thought for those here that are married or in a manogpomous long term relationship as opposed to those of us who are single, and not in monmogomous relationship, and don't intend to be. There may be an age differecencr too, although I'm not over the hill yet, I'm 52, single and free, married and divorvced twice, but still looking for the third charm lol. A guy like n74tg, Tony, is probqably like John Travolta on the dance floor, and quite popular, so I understand his dating concerns. The subject also touches many other concerns like education, sexuality, moral, ethical, social and health issues, and for some, a legal interest. I don't think this will be resolved anytime soon since there is more unknown about HPV Head and neck cancer than there is known, unlike cervical cancer, and if predictions are correct, this disease, OPHNSCC, will surpass cervical cancer by 2020, and many more dfiscusssions, questions will follow.

Last edited by PaulB; 01-22-2014 06:50 AM. Reason: many typos..half blind here

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






n74tg #176785 01-22-2014 08:02 AM
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Paul, you bring up a valid discussion point. Is HPV and HSV, for that matter, a "declarable" virus from a legal perspective. Only time will tell but definitely a worthwhile discussion in today's world. P

Help me out...

Is that o.O or O.o

lol

Have a great day Paul!


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
n74tg #176793 01-22-2014 01:08 PM
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n74tg Offline OP
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Wow, I'm honored, I only wish I was as popular as John Travolta on the dance floor.

[quote]I'm 52, single and free, married and divorvced twice, but still looking for the third charm [/quote]

In actuality, add 10 years to the age and this describes me perfectly (except that I can spell divorced).

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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