| Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 |
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The Advisory Committee on Immunization Practices of the Centers for Disease Control and Prevention is now recommending that 11- and 12-year-old boys routinely receive HPV vaccinations: http://www.nytimes.com/2011/10/26/health/policy/26vaccine.htmlThe article notes that private insurers use the committee's recommendations to determine what vaccines they will pay for and that under last year's federal health-care overhaul, insurers participating in the health-insurance exchanges created by the law must offer the vaccines that the committee recommends as routine.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | To Brian and David and all who kept the HPV topic out there, you have saved many lives of our future adults. Thank you!
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 |
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | To Randy's Sister, This was your thread. Looks like things have changed for your boys!
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | 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 | We have come a long way in the past 5 years with HPV. WAY back then most doctors didn't even recognize HPV as a causative agent for Oral Cancer. Dx'ed in May of 2006 with my Tx ending in Aug I had to fight to even get Moffitt to send my cancer slides to Johns Hopkins to test for the presence of HPV. Testing positive I convinced the St Pete Times to write an article about the male connection to HPV. Because of that I was invited to testify before the Florida House in the Spring of 2007 which was considering a mandatory Gardasil HPV vaccination for girls entering the 9th grade. Before the vote, the sponsor changed it from mandatory to provide an "opt out" clause meaning no one had to get it if they didn't want and despite that it still failed along political lines. My mask and I testified that HPV affected men as well as women and vaccinating females would save lives. Next Brian asked me to testify on behalf of the OCF before this same committee, the ACIP. That happened in Oct of 2009. I was one of only 6 to be allowed to speak. Previously this Committee had given it's highest recommendation (Routine) for the female HPV vaccination but now was considering the male vaccination. It was evident that the Committee would not listen to logic but would only allow testimony about the vaccine's proven effect on male Genital Warts. Since they wouldn't consider the cost savings associated with preventing all other male HPV cancers the Committee only gave it their Permissive recommendation meaning that parents would have to ask their doctors about it and more importantly the vaccine's cost would be much higher. The Committee said that when the medical community could "prove" it's connection to the other cancers then they would reconsider. We all imagined a lengthy period of time before this issue would be brought up again. So now just 2 short years later and the Committee using the SAME information it had 2 years ago concludes that NOW it is cost effective to give it it's Routine recommendation. Go figure but no one will complain! Now the war will start up again at the state level to see if new bills will be introduced to make it mandatory, with or without a "opt out" clause, for either girls or boys or both. I have already placed calls to the previous sponsors here in Fl.
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: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | This is a major leap forward for future generations who will not get oral cancer from this virus if parents get involved in prevention. I have been on this since 1999, and the science since then has changed little. What it takes is hammering on the people at the CDC every opportunity.
This story is making all the news wires, and we can thank the Bachman's and Perry's of the world for causing a stink ( in their own self interest to appeal to one portion of the electorate) to do more than the several hundred phone calls I have made to those in power of the last 4 years of really pushing for this.
Sometimes it takes an idiot to build a village. Thank all of you people who do not believe in science for getting this out front and center. You have created what you didn't wish.
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 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | David, my hat's off to you (as always). It staggers me to realize that there are still factions within the political community who are warning parents against the vaccine for so-called moral reasons. Predominantly anti-sexual of course, but also under the banner of the "dangers" of vaccinations in general.
The Dark Ages are still live. But thanks to you and Brian and others maybe some lights are coming on.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Mar 2011 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2011 Posts: 26 | Awesome work on behalf of the boys in our lives. Is it accurate that the vaccine must be received before the 27th birthday?
Robin, caregiver to husband, Andy (57 yo non-smoker) 1/2011 dx scc stage 4 -primary- tonsil/bot 2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin 6/2011 recurrence - mets to bone 7/2011 tx carbo/erbitux/5 FU- pet showed disease progression 11/2011- present clinical trial
| | | | 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 | Excellent work David and Brian!!! Thank you for what you are doing to bring awareness to HPV+ SCC and the benefits of getting vaccinated. Thru your efforts, many will get vaccinated. This will save many from suffering thru the barbaric treatments or worse, from dying of HPV+ SCC. You both make me proud to be associated with OCF and the good work it does. Hoping more changes will take place and it will be mandatory for everyone to get this important set of shots. 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 | | |
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