| | 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 | Yesterday Dr Trotti and I were filmed at Moffitt for Moffitt's web site. When completed our pictures will appear somewhere and clicking on either will take you to a list of questions and clicking on each one will take you to our video response. Naturally I haven't yet seen my edited responses and I don't know how long this process will take.
Dr T wanted me to be filmed first as he wanted to "learn" from my session. We traded barbs throughout as I would respond to something and then he would counter it and then I would counter him. You would have had to be there but I really enjoy doing speaking engagements with Trotti because we do feed off each other nicely. Trotti had to have his crib sheets when answering his questions and that took his eyes off the camera and the cameraman was constantly asking his to look into the camera. Then I would pipe in that I didn't need to look at any notes to answer his questions and perhaps they could lay my voice over his film. They decided to stick with him.
One really positive is that I was able to get a question asked of me about my involvement with the OCF with the promise that they will add a link directly to our website. Not bad to get Moffitt to agree to add a link to the OFC on their website!
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | David,
And I can say, "I knew you when!" So wonderful that Moffitt is expanding the website with more OC information. I look forward to checking it out.
Dr. Trotti is just the best. On our first visit to Moffit, Dr. Trotti took time to see us even though our appointment was not with him initially. He also followed up with a phone call to us at home to deliver the concensus from the tumor board. I felt that Bill was in great hands with him and the team.
What great news that there will be a link to OCF from the website! Thanks for your advocacy,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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 | Great job David!!!!! Thanks for all you do 
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Good work, David! Let us know when/where we can watch the video.We get the Tampa news stations down here in Sarasota - will it be on there? THANKS for being our FL spokesperson!
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 53 | On behalf of OCF I'd like to thank you for making the time (and actively being part of making this project a reality) to do this interview. David is not just our Florida spokesperson, but has represented our positions at the CDC and more. His formal position at OCF as our senior patient advocate is one in which he routinely provides evidence of his value to the the cause, to others in need, and to the foundation.
I am working with geneticist at Mayo on collecting cells from David to see if OCF can clone him. At the very least, I hope if that project gets held up by those interested in the ethical questions of creating another life form just like him, (and the ramifications of that in areas not related to oral cancer advocacy) that others will see the positive impact of becoming an engaged advocate for our cause and organization (like David), and do themselves, the same selfless kind of things, and be part of creating positive change in the world.
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) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I think one of me is enough at one time. I know many people that would cringe at the thought of 2 Davidcpa's running loose.
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | But Jo would get twice the work from you!
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | 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 | No even Jo I think would pass on another me. About the only ones that I think would want another me would be Buddy and Lamont and they would fill my days with walks, play time, car rides and McDonald's ice cream cones.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | One's enough!!!!!
Great job. You never cease to amaze me with all the ways you find to personally help others as well as using your expertise to spread the word and get OCF publicity.
Keep up the good work.
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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