#10019 03-27-2007 01:02 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I just received word that I tested positive for HPV 16. I have been pushing Moffitt to send my slides to Johns Hopkins for months. They now told me that they were holding mine back so that they could do a blind test with JH and their new HPV testing. I was also told that I was responsible for Moffitt screening Oral Cancer patients for HPV and their new HPV testing procedures. While I'm sure that is an over exaggeration, I am pleased that I might have had something to do with pushing them along in the HPV + oral cancer connection.
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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#10020 03-27-2007 01:25 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | GOOD WORK DAVID! You have probally helped more people than you will ever know! Let's not forget your work in the publishing media either! I too, want to bring more attention to this horrible disease and all it's ugly cousins. Somehow, someway, I will before it consumes me... There are MANY LEADERS on this forum, and YOU are one of them!  Thank You! Sincerely, PeteyB
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#10021 03-27-2007 02:52 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | That is wonderful, David! And awesome to think of what this means for all oral cancer patients. Thank you so very much for all that you do and have done in helping all of us and the countless others that will be helped by your efforts in furthering the screening and testing process of the HPV connection to Oral cancer. You are truly a great human being!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#10022 03-27-2007 03:33 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | David,
That's awesome. You have done a great thing. Don't be so modest.
Jerry
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"
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#10023 03-28-2007 03:03 AM | Joined: Sep 2006 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2006 Posts: 51 | I've been pushing my sister to get her slides checked out but she hasn't really pursued the issue...I think this may help her get a bit more motivated--thanks!
Sarah
Sister is Stage 4 DIAG 9/06 Tongue/Tonsil /T4N1MO - BOT -right lateral/crossed midline-42 X IMRTS/ Carbo/Taxol for 7 weeks- finished treatment early 12/06-no trace to be found 1/24/07 Recurrence 12/09- rad neck and partial gloss 2/10
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#10024 03-28-2007 04:09 AM | Joined: Sep 2006 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2006 Posts: 42 | Great news, David! Thank you for your efforts - keep on keeping on! ------------------------------ Marty-CG to Husband,Stage IV,SCC left tonsil,3 lymph nodes, HPV+,DX 04/06-TX 35xIMRT, 35x cisplatin/tarceva, neck dissection 11/06, beginning HPV vaccine trial at JHopkins 04/02.
MARTY-Caregiver to husband (non-smoker/non-drinker)Dx 04/06 SCC Stage IV left tonsil-3 lymph nodes,HPV+,Tx 35xIMRT,35xcisplatin/tarceva,neck dissection 11/06, beginning HPV vaccine JHopkins 04/07.
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#10025 03-28-2007 11:18 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Marty,
Is he beginning the trial 04/02/07? Is there any room left? Do you have a contact?
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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#10026 03-29-2007 03:56 AM | Joined: Sep 2006 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2006 Posts: 42 | DAVID,
He is beginning the first vaccine on Monday, 04/02/07 - he is in the third phase of the trial - as to openings, I suggest you contact Dr. Maura Gillison at Johns Hopkins. She is our MO as well as head of the trial. I don't have her card with me right now but if you need more information, e-mail me and I will get that for you. There are several pre-trial tests to have done i.e. neck scan, tetanus shot, bloodwork, skin test. GailMac who posts regularly on this site knows quite a bit about the trial as well. Her husband just completed this vaccines. So far no side effects. Just hopefully added insurance and help in the fight against this terrible disease.
MARTY-Caregiver to husband (non-smoker/non-drinker)Dx 04/06 SCC Stage IV left tonsil-3 lymph nodes,HPV+,Tx 35xIMRT,35xcisplatin/tarceva,neck dissection 11/06, beginning HPV vaccine JHopkins 04/07.
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#10027 03-29-2007 08:10 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hey David,
next time you see the doc ask them if post Tx testing is possible and/or recommended.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#10028 03-29-2007 12:57 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Gary,
I left a message on his recorder. If I haven't responded by Tues could you remind me because everything else my tiny brain is trying to hold may cause me to forget my unanswered call.
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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