| Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | OP "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | Hi just a simple new thread that has probably been done to death before. I have HPV interstingly I still await the biopse how do they not know it is not Planus Lincus??? "2nd week of Chemo no sickness anyone want a Chemo boast contest? Should I be kissing my 2 and 3 year old beautful daughters? Ruby is my Gardian Angel she cuddles me and pats my back. She has been massaging my Lymph Node from before I new I was sick? Children are beautiful. Should I share a glass of juice with them? Daft questions I know but it is hard coping with such a scarey illness with such a simple start> Kung Fu Panda 11 "I love you Guys" Today I am making Puppy faces out of recycled yogurt snap cartons.As veiwed on BBC ART ATTACK. Cuddle your cancer and send it away never to return.
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | Joined: Sep 2009 Posts: 8 Member | Member Joined: Sep 2009 Posts: 8 | transmission of HPV only happens during open mouth kisses due to interaction of saliva. so kissing your daughters on their cheeks is not likely to get them infected. sharing juice?? ya. maybe avoid it just to be sure.
CG to father, SCC, soft palate - Aug09, 3 TIP, 6 Erbitux + 30 IMRT (60GY) - Jan 10 October '10, Left Partial Maxillectomy + Palatectomy + Recons, 8 methotrexate.Extreme pain in throat and head August '12 - Right partial Maxillectomy, Left complete maxillectomy, Mandibulectomy, further treatment? | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Keith, This last week I attended a lecture by Dr. Edmond Truelove, former chair of Oral Medicine at the University of Washington, on Oral Cancer at the Pacific Northwest Dental Convention in Seattle that went over his recent oral cancer research which included dysplastic conditions in the oral cavity. It was really quite fascinating and I learned a lot about dysplasia (Lichen Planus, lichenoid reactions etc) as it pertains to oral cancer. HPV+ oral cancer develops in the Base of Tongue area and rear oropharynx (tonsils etc) in an area that is hard to detect and no visible early warning signs like dysplasia that we currently know. There has also been no evidence that I've seen that indicates the virus can be transmitted via saliva or kissing. That being said, there are a lot more questions than answers when it comes to Oral Cancer obviously so vigilance and precaution, if only for peace of mind, makes sense. I wouldn't let it consume me in anyway, however I would make sure to get regular checkups with a Dental Oncologist or ENT that uses a VELscope screening device to monitor the dysplasia and keep a photo record of it to monitor changes etc.
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 was told by Dr Anna Giuliano, Chair, Dept of Cancer Epidemiology and Genetics, who I have traveled with and given speeches with, that HPV is highly contagious and can be transmitted via deep throat kissing so I agree Vaibhav's post. I also agree that more about HPV is NOT known than is known. CubanKeith, how do you know that your cells are positive for HPV if the biopsy isn't finished? Adding a Signature Line would be most helpful if you plan to continue to post.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Thanks for that info David, I'll have to read her research on it. It's scary talking to these great minds and understanding what they don't know about this disease.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Eric, It's also been 1.5 years since she made that comment to me and a lot can change in that time frame medically speaking. I also question his HPV status and without a Signature Line it's really hard sometimes to answer a post. It's also quite possible that EVEN if he is/was HPV+ that he is no longer but anyway I thought the best way to answer his post was conservatively.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ 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 | well considering your age, ethnicity, and occupation David, I'd say conservative would define you in many ways  sorry couldn't resist!
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hmmm.... if the biopsy is on lichen planus (or an area where you would find it) likely it's not HPV related because usually that's on the mouth, no? In answer to the original question how do they know it's not lichen planus... a biopsy will tell you... ;o)
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | My point exactly, without the bio results how can one state that they are HPV, conversatively speaking, of course. Man talk about occupational profiling!
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 |  Profiling is interesting, you can tell a lot about a person by such small things as the words and phrases they choose, how one dresses etc. The occupation, age and ethnicity are the easy, more general indicators. Sorry I've watched entirely too many episodes of Criminal Minds.
Last edited by EricS; 06-20-2012 06:47 AM. Reason: always spelling
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.
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