| | 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 | Angel, The slides that confirmed SCC from your tonsils can be used to test for HPV and they can be sent, with your permission, to Johns Hopkins. Moffitt sent mine like that and within 2 weeks the results were 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: May 2008 Posts: 219 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | David, Thank you so much! I will follow up on that tomorrow. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | The HPV page of the web site has the information on how to get in contact with Hopkins. If you are a doctor that wishes to have tissue samples tested for HPV, or a patient that wishes to provide information to your doctor on where this can be done with accuracy; OCF recommends that you have the testing done by Johns Hopkins Medical Laboratories. They have a great deal of expertise and experience. The directions on how to contact them or where to send samples to are located at this link http://pathology.jhu.edu/labservices/hpv.cfm
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 |
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 | Interesting article and it's also interesting to see the statements of the various " HPV experts". Testing positive for HPV 16, it's good to see that progress is being made towards definitive clinical trials and more research.
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: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Johnny, Shands Head & Neck at Gainesville is where I was treated and go to for my follow-ups. I can't sing their praises high enough. They're still taking great care of me.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Reverie,
I'm from East Central Florida and was treated at Shands in Gainesville. I was sent there because my case was too advanced and aggressive for the local ENTs or Oncology departments to handle. It is a teaching & research hospital connected with the University of Central Florida. Their Head & Neck Oncology department and its doctors and professors are very highly regarded throughout the world. When we first were told that I needed to go there, my husband looked it and my RO up on line. He said that my Doc was thought to be one of the 5 best experts in head & neck cancer in the world.
So yes, Shands is a very, very good place to go.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Jan 2009 Posts: 1 Member | | Member
Joined: Jan 2009 Posts: 1 | my right tonsil is swollen and not only that, the base of my tongue has numerous red bumbs,that are very irraitating. This are sysptoms due to HPV. What should i do and does anybody esle have these red bumps on thier tongue? | | | | | 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 | Nick: Welcome to OCF. Please take a few minutes to read the info for new memebers, it will help guide you. Also, please start your own post for asking questions. When you have time, add some info to your profile for a signature so others can know something about you and its easier to answer your questions. HPV has been discussed many many times here. Have you been tested positive for it? For info you can search on the forum or on the main pages, both are full of info. There are several members here who are very well informed about HPV, sorry Im not one of them. If you post on your own new thread, then they will see it easier and answer your questions. When in doubt, always see a medical professional. Best of luck to you.
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  | | | | | 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 | Nick, I'm not sure if you are asking or stating the part about HPV but unless your cells have been tested by a qualified HPV testing facility, there is no other way to confirm that Dx. If your symptoms have persisted for a few weeks you need to see an ENT and one that sees cancer patients regularly.
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.
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