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Elianne #122512 09-29-2010 10:18 PM
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Well, I went on TV to do a story about my HPV+ disease and of course the subject of my wife and our sex life came up - on national TV- and when I got home she was convinced, since we had never discussed how this came about that she had given it to me. It took a couple of years of reading articles about the virus, before she finally believed that I could have been the one that brought it into our relationship... and idea I wanted her to embrace. Both of us had multiple sex partners before our marriage. But the truth is there is no way to know, and the past is the past. There is only today, and we all hope for a tomorrow. But tomorrow is guaranteed to no one.



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.
Elianne #122518 09-30-2010 04:08 AM
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I know quite a few people who deal with HPV not necessarily orally, but ya. Its not a fun disease, but it's also not always detectable, and people can pass it on without knowing as well.
What I don't understand is why doctors tell people they don't have it anymore after 3 years of clear checkups and then 6 years later you get another symptom or it shows up again? Wouldn't this generally mean that it's been there the whole time, and not that it goes away. I have heard it both ways from doctors, some say it's life long and others tell you it goes away. Do we really know the correct answer to this?? If not, doctors shouldn't really be telling people one way or the other.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
bethers0808 #122521 09-30-2010 05:40 AM
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Well I don't see how your doctor could ever declare you HPV free. Again there is waaay to little known about HPV and that's one reason I started my little crusade to bring this virus to my public 4 years ago. Certainly not because of me but there is a lot more info out there today than there was 4 years ago and hopefully 4 years from now we will know a lot more.


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.
davidcpa #122530 09-30-2010 04:37 PM
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Bethers -Wouldn't it be just as likely that your immune system cleared it for several years, and given how common it is, you just got reinfected? The person I turn to with this question is Maura Gillison, and her answer is that the immune system is certainly capable of clearing it. Whether or not it has periods of latency, no one knows, and I do not think we will have an answer for that.

Latent and dormant are not the same thing, and people/doctors that use those terms interchangeably I believe are mistaken. Latent would mean that you get a disease, and that takes some period of time, weeks, years, before it becomes active and manifests itself in a manner that can be recognized. A latent disease could be cured and not exist in your body afterwards, whether by your immune system or outside intervention.

Dormant insinuates that it stays with you like herpes forever, and has periods when it is active and periods when it is not, but it is something that you have for life. We know Herpes simplex 1 and 2, are like this because when non active we can still go and find it living on the ganglion of your nerves. We do not know the same thing about HPV, and that is why many science people believe that because of the fact, that it is so common that -cure, reinfection, cure, reinfection etc. - is the most likely scenario.

It will be many years before we have answers for this and many other questions about HPV. Not a lot of research is being done on it specifically, so it will unveil itself to us over years not some shorter period of time. OCF gets phone calls everyday from so many misinformed people that I am truly sick of explaining this to wives that think their husbands have had extra marital affairs, couples who have a woman test positive and wonder if they should stop having sex and so much more. The Oral dna test being sold to dentists, and which has limited value, is being used by dentists as much for profit motive in my mind as any other reason, and they are creating a lot of anxious patients out there, who really have noting to worry about. Of course they don't know much about HPV so what they tell patients is most of the time when I hear it wrong.


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.
Brian Hill #122536 10-01-2010 05:35 AM
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Yes, HPV is a major health issue that is not getting the attention it deserves. Let's not forget the numbers here. According to the CDC (Center for Disease Control)
[quote]Human papillomavirus (HPV) is the most common sexually transmitted virus in the United States. At least 50% of sexually active people will have genital HPV at some time in their lives.[/quote] Even more shocking was this CDC statistic
[quote]By age 50, at least 4 out of every 5 women will have been infected with HPV at one point in their lives. HPV is also very common in men, and often has no symptoms.
[/quote]
Keep up the good work Brian and David on spreading the warning about HPV.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #122541 10-01-2010 07:21 AM
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My main concern is can I still give this to someone else by just kissing them? Since I'm a guy maybe I also have it in the genital area and don't know? Also, why the hell did we get this and other people who have multiple oral sex partners don't get it. I've talked to several of my military bodies and old college friends and they have all had roughly the same amount of partners and they didn't get it; why did I have to draw the short straw!!!

Sorry just wanted to vent! Would it be safe to say that if and when I meet someone in the future if she gets the vaccine she would be safe?


Charles

HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.

Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
Irishgypsie #122543 10-01-2010 08:03 AM
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Charles,

No, it's not a matter of not "getting it" because if we come in contact with it we will "get it" but in most of us our immune system clears it. So we go through life passing it back and forth and our immune systems constantly clears it but the trouble begins when, for reasons not known, our immune system doesn't clear it. Some think the virus can go hide some place and then come out at an opportune time and cause problems and some, like Brian and myself, think it gets cleared and we get reinfected and sometimes it just doesn't get cleared and then it starts trouble.


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.
Elianne #122560 10-01-2010 11:15 AM
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I have a delicate question, "IF" sometone does have HPV+ 16 would it be recommended NOT to have any future oral sex contact?

We are waiting on results of my husbands HPV connection and I am just thinking to the future..

AND would I be more suspectible to getting cervical cancer if my husband has the HPV 16 strain?

Thanks


CG to 44 year old husband, Dx: 9/23/10 SCC T2N0M0 (Right Tonsil)

Radiation only started on 10/13/2010
13/33 Radiation Treatments done!
JDR #122566 10-01-2010 01:03 PM
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First off IF his cancer is positive for HPV 16 then he must have gotten it from someone and his immune system apparently didn't do it's job of clearing it. As for the person he got it from, perhaps theirs did and they no longer have the active virus. I don't know how old you are but chances are GREAT that you have contracted the virus before and your immune system has most likely cleared it. You can be tested for the presence of HPV.

As I have said there are many unknown questions about this virus and I doubt that unless you were to talk to Dr HPV, Maura Gillison, herself that you could get reliable answers.


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.
davidcpa #122571 10-01-2010 02:00 PM
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Yes, David, I agree, there is WAY too little info out there on HPV, given there are epidemic proportions of it at our universities and colleges.
WHEN will the ads become real and state the facts?? The Gardasil ads are so mamby pamby and people don't realize how scary this is.
I'm mad as hell and worry about the future of our childrens' generation with this, let alone am furious knowing this will take my loving husband of 34 yrs from me.
Bonnie


Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
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