| Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | OK I am confused now. Is there any benefit to my knowing if my cancer was caused by HPV. My MO would like to have my wife vacinated, but she is too old (outside the approved age). Will it change anything we do post treatment. I admit it would be nice to know what caused this, but will it really help?
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hi The only thing i can say is that it seems oral cancer with an HPV origin seems to have a better long term outlook,so i guess thats worth knowing.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | 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 | Flip, As Liz said, there have been at least 2 studies that I am aware of that conclude that HPV+ SCC responds better to treatment than HPV- SCC and (therefore) has less of a chance of recurrence and a higher survival rate. This obviously will not change your recovery because you and your treatment will pretty much determine how you will recover. I personally wanted to know what was trying to kill me and of course I was somewhat relieved when these studies were published. Re your wife getting the Gardasil vaccine, I do know that some local docs here are giving it to people, boys and girls, who are outside the intended age but chances are she was probably already infected and most likely her immune system cleared the virus so when/if she gets reinfected will her immune system clear it again or would the vaccine? Haven't a clue and I doubt anyone does. Well maybe Brian...
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: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | The vaccine only works in individuals who have never been exposed. That's why the very young get it. Mathematical probabilities show that as a person goes past 26, the odds are they have had some contact with it. Hypothetically, if her immune system clears it in the past it should continue to do so, until perhaps some point in very old age when all of our immune systems become increasingly incompetent. The vaccine does not clear existing infections. It creates an antibody that prevents them from happening in the first place. This mechanism only works in NEVER EXPOSED individuals. Ergo, if she has been exposed it will have no efect.
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: 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 | Brian, Here's what confusion prompted my comments that I have been unable to find the right person to answer. We know that HPV is a very common virus finding it's way into a very large % of the population starting at a very young age. We know that most people's immune system clears the virus and it never affects them. We know that in a few of us the virus can cause warts and cancer in the squanmous cells. It stands to reason that one can be constantly introduced to the virus throughout our lifetime and either our immune system or the antibodies created by the vaccine continue to have to clear it. We are told that the virus may go dormant for decades before it can cause problems. So what I can't get answers to is: If the virus infects us and our immune clears it initially, will it continue to clear it upon subsequent infections, if any? What causes most immune systems to clear and some not? I have been told everything from genetics to stress. If the virus goes dormant what triggers it's awakening? and if our immune system is weak or incapable is that when the virus can cause problems? or if our immune system is "stronger" will it clear the virus? Re the vaccine, and assuming what I have said above may be factual, if the virus has gone dormant or we are reinfected and our immune system is not capable of clearing it, wouldn't the antibodies created by the vaccine given at any age then clear the virus?
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 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Thanks, David -for asking that question. I have been considering getting the vaccine (paying for it myself) for those very reasons.
Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | David. Here is what I know to be fact TODAY, as you understand OCF and others are sponsoring research that is going to further elucidate the "don't knows" about HPV, but that will reveal itself over a period of years, not immediately. This is the best guess based on how our immune system works in most disease. Its ability to recognize something and deal with it is a function of genetics, (an ever changing part of evolution) and later in life, the robustness of its ability, which declines over time. (If it didn't we'd likely all live to be over 100) Those of us that are anglo saxon descendants of Europeans, have ancestors that survived the black plague which killed 2/3rd's of the entire European population at a period in time in which there was NO medicine as we think of it today, and we all have a genetic predisposition to be protected from that disease. Our ancestors were the 1/3rd that survived the plague. They survived not because of any treatments but because of some genetic protection that gave them an immune system that did so, not because of any treatments/medicines available. It was the luck of the gene pool drawing. Just like that example, there are individuals that have a predisposition to be protected from, or susceptible to, getting HPV. So like in other diseases, genetics plays a huge role. Those protected will continue to be protected, those not, continue to be not. You and I are in the not group. Just remember that genetics, is the baseline controller of evolution, and from generation to generation, genetic qualities that perpetuate the strongest of the species continue to dominate. Having said that, here's a wrench in the works for you. The genetic predisposition to be protected from the black plague, hundreds of years later (today) makes us vulnerable to a different antagonist. So what allowed our ancestors to survive one of the worst catastrophes in history, now makes us vulnerable to something completely different. Thanks a lump evolution..... Megan can tell you what new disease this is if you are interested, I just had her read a book on this so she would have a basic understanding of evolution and genetics. There is no physical evidence of the "goes dormant" idea in HPV. Some doctors and researchers just believe it because it is not uncommon for viruses to do this. But published evidence of the "theory" does not exist. That would mean we could find it in its dormant state in our bodies like we can with herpes virus, which lives in its dormant state on the ganglion of your nerves. But it is just as common for viruses to be controlled by our immune systems. The flu that we get is controlled in many variations by antibodies that our immune system builds against it. The crumby thing is, that virus mutates into something new every year, and the antibody that you developed last year, isn't necessarily any good to defend you this year. Hence annual vaccines/flu shots. So your second part of that question - what allows it to awaken, is a mute point, since we don't know that it goes dormant for sure. If it does, like HSV1 or 2, it is fluctuations in our immune system's strength that allow it to return. You get HSV cold sores about the time you get the seasonal flu etc. The vaccine (the current two) only works in people that have not been exposed. You body's ability to build an anti-body to it is not possible once you have been exposed, so getting the vaccine after that point in time does nothing. This is why they (FDA) cut the age of getting it off at 26, since they mathematically figure that sexually active young adults will have been exposed by that point in time. Not 100% factual, but an assumption that was reasonable. Given its own devices, Merck would be selling it to 60 year olds. There are people working on a new vaccine that would work in people that have been exposed, and there has been some promising early work, but nothing near bringing to market in the near future.
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: 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 | Brian said....There are people working on a new vaccine that would work in people that have been exposed, and there has been some promising early work, but nothing near bringing to market in the near future. When I first came here 100 years ago JH was doing a trial on boosting the immune's systems response to people already exposed to HPV, I assume under Dr Gillison. I tried to get involved but it would have meant traveling way up north at my own expense and we all know how much I hate cold weather. Anyway I digress. I haven't heard anything much since then. Any updates? I did mention this trial to my Dr Trotti and he said there have been others in the past along the same lines that were not successful. So Dr Gillison doesn't buy into the dormant thing? Your right about no studies proving (or I guess disproving) that. I'll have to ask Dr Anna Giulanna, a HPV researcher at Moffitt. She was one of those that told me 3 years ago that the virus could go dormant for decades as did Dr Beata Casanas, Hillsborough County, Fl Director of Communicable Diseases. Again that was 3 years ago. You have the privilege of being surrounded by these expert types constantly.
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: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | Gillison is a researcher first. So I would guess that her opinion about the dormant thing is true to a researcher's nature. Evidence based. No evidence, means every idea is supposition. Gillison was part of that original vaccine trial and it had positive outcome in the 2 people that have been looked at for increased antibodies. But it was a very small trial, and the remaining people in the trial have not been examined yet. Even if they were all people that had a positive antibody result, it isn't a big enough trial to move forward on - just a proof of principal trial. That means it needs big money to go to the next step. Right now you might as well be a snow ball in Hell when it comes to getting funding for a new trial like that of any size. Your doctors when you ask them, will tell what they believe. Belief in this situation is just that, but do not mistake that for evidence based fact. When someone gets the funding to really look at the life cycle of the virus, there will eventually be an answer. The debate will be this: Is answering that question, and the cost to do so, the best thing we could do right now related to the expenditure of money on this virus? One major breakthrough on HPV was in the OCF news about 10 months ago. A team was finally able to develop a technique to keep it alive in a petri dish. Doesn't sound like much, but it is a huge leap - it means that we can study it more closely when it is not in people, (in vitro) and at significantly less expense. It is a wonderful opportunity for me to be around people that are world class researchers, and I get to be in sponge mode. But at those same conferences I am listening to people who are medical shills for the spit tobacco industry, others who are lobbyists for the status quo, and obstructionists to progress in early detection. Believe me there are many agendas out there and turf to protect, for reasons that have nothing to do with what is best for patients or the population as a whole. Think it's cool to hang out with A list celebrities? Try putting up with self absorbtion, and priorities that defy logic to the rest of us. The triumph of materialism and ego over using celebrity for good in the world. For sure they are not all like that, but too many of them are for my taste in people to hang with. Yup, all this is quite a privilege. But there is balance when you find some young bright researcher who has never been published with an epiphany, and you have the very small amount of money they need to prove it. Think Gillison, OCF, and the Runyon Foundation in 2000. It just happens too slowly for me. And I ain't getting any younger or prettier.....
Last edited by Brian Hill; 10-05-2009 09:34 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Be like me Brian, some of us can't get younger or prettier, but how in the hell do you improve perfection?? LOL
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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