| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Amazing. A midnight email from my RO [quote]Remember back earlier last year you asked for us to test your tumor for HPV status. Our pathologists at that time did a study using one technique (immunohistochemistry staining), and it was negative. We now use a more sensitive testing technique (called PCR). We reran your tumor using this technique, and it was positive for HPV subtype 16. I thought you would be interested. Hope you and your wife had a good holiday season. All the best,[/quote] This is great news as the studies increase showing far better survival rates for HPV positive oral cancers. It even is on the OCF main board [quote] Dr. Gillison wrote; We found that HPV-positive HNSCC [head and neck squamous cell carcinomas] had significantly improved disease-specific survival when compared with patients with HPV-negative tumors, even after adjustment for age, lymph node status and heavy alcohol consumption.[/quote] Plus it lets me put the perennial "Why me?" and "What caused this?" questions to rest instead of suffering total bewilderment on how following all the exhortations on exercise, nutrition, meditation, etc. could have failed me so badly. I had thought it was statistically improbable for me not to have gotten HPV since I was single until I was 36 and had given up celibacy after leaving the seminary in a time of "Free love" and "If you can't be with the one you love, love the one you're with". I do not resent my Karma anymore as I can't regret all the love I was given. Need to update my signature line. 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
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Charm,
I think they call this closure. You can put that nagging question to bed.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Charm,
Where did it come back?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Charm,
I think this is the only forum on earth where people are going to be relieved and happy for you for having and STD. Here's to free love!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I think it's been labeled an STD to quickly unless you include French kissing in the STD arena.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I do David, I do 
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Kelly, Eric & David Yes, it is a big relief. Finally I can answer the ubiquitous two part question: How did you get that, did you smoke? which 99% of the people ask me. Nope, just a martyr for the sexual revolution. As for French kissing, the YouTube video on the OCF main board about HPV does indeed explictly take Eric's position. OCF -HPV Although I'm pretty confident that was not my mode of transmission as a college graduate of the class of '69. For OCF readers who have not checked this HPV video out, it's midway thru the OCF writing and my wife was quite impressed that the spokeswoman is young and female so that the message gets across that this is no longer your father's oral cancer. It's only 5 minutes long and worth viewing. As the snow and cold envelop the midwest and East coast, the sunny warm backdrop of the marina and boats of the video are enticing. Finally, the cancer came back in the same place as the first tumor - left base of tongue nestled next to the hyboid bone. So far I have not heard or read of any HPV positive oral cancer patient having cancer the third time. For once, I do not want to be the exception and trailblazer. 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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I was hoping with as many women that I have made love to that mine would be HPV. I am so glad for you Charm and I am sitting smiling with you. Good luck my man and spokesman of true words.
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
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | FYI the spokeswoman is Megan, the OCF Communications Manager.
I'm very happy for you Charm about having some good news and at least some closure for "the questions".
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | EZJim & Jerry Thank you both. I know rationally that it doesn't matter in the end how or why I got the cancer but there is a very real emotional satisfaction on closure. Oddly, in that way I had envied the former smokers here on the board. They "knew". And now I "know". For me it makes it so much easier to accept this and keep moving on. If it wasn't for OCF, I would not have had a clue about the HPV connection (okay readers, if you didn't follow the other link, click on the purple HPV and scroll down to watch Megan) 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
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