| Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | I'm still back trying to visualise self-inoculation!
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | 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 | lol samkl
I'm betting that like me, you were thinking about that old joke about the dog and his balls ...
but they mean hand to wherever - enthusiastic masturbation in other words
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 | OK so explain to this CPA the mechanics of the vaccine. If my immune system failed to attack my HPV at least this one time and assumptively (which I know I can't assume) will/would never recognize HPV as a threat, then why couldn't the vaccine, even at my advanced age, help to protect against future exposure?
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 | All these HPV factors, studies, scenario's, questions sound like an Abbott and Costello routine for those that remember the show, "Who's on first? A funny baseball comedy routine that's confusing Lol. I'm going to have to read these studies several times, open an investigation on all the usual suspects, HPV-16, 6, 11, E-6, E-7, p53, EGFR..., and start taking names, and make a family tree connecting them all! It may take years, but we'll get to the bottom of this
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 | The vaccine only works in people who have never encountered the virus. But you're making an assumption, that the vaccine creates antibodies that recognize the viral dna like a flu shot does. The people that invented this vaccine were really smart. They created an injection of the protein that coats the virus, (this later dissolves after the virus enters a cell and becomes something different - the E6 and E7 onco proteins that knock out two critical parts of the cells dna that control apoptosis and immune signaling [ p-53 and rb] that are called the tumor suppressor genes) which your immune system learns to recognize. Unlike other vaccines this is one of the first to use a part of the virus which is not dangerous to us to alert the immune system. There is no viral dna in the vaccine shot. So your immune system goes out and destroys invaders that have this unique protein coating on them, not targeting the virus itself (they just happen to be coated with the target protein). All this is about making vaccinations safer without giving you a small part of the disease which is the way most vaccines work. So theoretically it might work in you because your body did not recognize the virus itself. But many HPV patients that have been treated for cancer do develop antibodies after treatment for some reason yet unknown, and that MAY account for why so few of us that were HPV+ do not end up in multiple recurrences, or at least at far lower rates than tobacco patients. So you may already have protection, and unless a researcher did an analysis for the hpv16 antibody in you, you wouldn't know for sure.
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 | Brian explains it better than anyone. Here is something I posted on another post, but think it's appropriate here. It may veer off the current discussion, but is HPV related. I have read, HPV outside the oropharynx, like oral tongue, elsewhere, do not have the same treatment response that we've seen in the tonsils, BOT to date. Just mentioning since there is talk with deescalation of treatment with HPV-positive in the Oropharynx, which should only be used in clinical trials, for now, but has anyone heard this, reason? I would think that Tobacco may be a factor. Is there talk of deesculation in areas outside the oropharynx for HPV-16 postive patients.
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Karen, I was thinking one would have to have more imagination (and a much better lower back) than my good self.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | 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 | Soooo unless someone would/could determine that I did or did not have a antibody for HPV post Tx then is it possible that the vaccine could benefit me? I just go back to that trip I shared with Dr Anna Giuliani, Moffitt's HPV researcher, when she told me that if I were still single I should get the vaccine.
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: 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 | David My friend the epidemiologist (the one that put the Australian submission together for vaccine for boys) suggested that Alex and I should both have the vaccine - his reasoning being that if Alex couldn't clear it by himself he would not have antibodies. He told me that he had some anecdotal evidence that the vaccine might have some effect on decreasing the incidence of dysplasia in older women (cervical) which applies the same thinking.
When I asked Alex's radiation oncologist about it, he looked confused and said, "that would be a bit like shutting the gate after the horse has bolted wouldn't it?"
I must admit, I lean more towards the epidemiologists thinking but have no scientific reason for thinking that...
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: 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 | Most of the medical community are not even aware of these additional HPV types found on the tongue cancers, let alone thinking about changing protocols related to them. We have seen a number of tongue cancer patients who are non smokers and appear to be HPV negative respond poorly to treatments. However there is no data that shows that they were tested for these other HPV types, and we don't have any data on how these other HPV type respond to treatment. Karen and David have good questions. I tend to believe that none of us would benefit from being vaccinated after an HPV16 oral cancer. However, I like the Australian doctors ideas. Just musing on it (as an unscientific approach in logic) could you fool the immune system into looking for this protein with the vaccine, and destroy any possible HPV 16 that was combined with it in your system now or in the future? I have no clue, and since recurrences in HPV patients are few, what value this might be, except to quell our fear of things that go bump in the night, by feeling that we have done everything that we can. (counting on a psychological placebo effect)
Last edited by Brian Hill; 06-13-2013 04:17 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. | | |
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