| | 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 I sat on a panel at Moffitt where the topic of the presentation was Head & Neck Cancer and HPV. About 150 doctors and even some patients attended. On the panel was was my Dr Trotti, an RO, Dr DeConti, an MO, Dr Savell, Anatomic Pathology and myself a CPA. Hey I got letters too! After the presentation Moffitt hosted a reception and the whole show lasted almost 4 hours. I gave away a ton of my OCF business cards and OCF brochures and a lot of people were seen wearing our pins which I placed next to the brochures. I got 2 invites to speak at support groups. Leaving Moffitt at 5pm which is way on the other side of Tampa which means I had to go thru Tampa to get home during rush hour was not fun especially since I only have one stoplight in between my office and my home but man was it worth it to get OCF's name out there. Three things I learned: 1. Moffitt plans to go back and test all the slides they have where the primary was in the Oropharynx for HPV. Trotti said that was over 200 samples. They currently test all new patients for HPV that fit the profile. 2. Dr Trotti gave me details about his planned study in reducing the radiation (60 instead of 70) and Carbo in lieu of Cisplatin in HPV patients in hopes of seeing if we can reduce the side effects and still kill the cancer. Study will involve 650 patients and is already past the preliminary stage. 3. Dr Savell said that as long as there are good tissue samples he can test for HPV regardless of age. Moffitt has theirs going back beyond 2004.
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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | David CPA,
You are the bomb!
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | 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,
I am proud to call you my friend. You are awesome!!!!!
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: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | David - how great that you could do this. I was interested to hear what you said about Moffitt planning to go back and test all slides where the primary was in the Oropharynx. Have they considered anything more anterior? I have asked my surgeon at MD Anderson whether they would consider testing tumors like mine, that were on the lateral side of the anterior tongue, but he says that there are no known cases of HPV in that area... I still wonder sometimes, since I had none of the other risk factors, plus my Pap smear was positive for HPV when I was tested for that a few years ago.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | 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 | You have come a long way my friend. You have matured into a serious oral cancer advocate. Knowledgeable, and willing to extend yourself in service to others. More than that you have become one of OCF's strongest advocates, seeing that our name is represented at important meetings from the CDC to Moffitt. Exposing OCF to treatment professionals that become our partners in helping OCF define its missions and direction. From your early efforts just to see that your treatment center had our literature in it so other patients could find us, to now being a spokesperson, you continue to change the lives of others. Your efforts have impact on the national agenda and dialog, and exemplify some of the finest qualities of the human spirit. OCF is proud to have you out there in our name. Now, how do we create clones of you? Take a look folks - it started as simply as putting our literature in your treatment centers.
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 | No it started from one day Brian seeing my post on another oral cancer site that I had just found and e mailing me and saying " why don't you come over to my site, it's much better." Boy was he right. On the other site I would post in need and MAYBE 2 days later I would get ONE response!! On this site I posted my first HELP question and within 15 minutes I had 5 responses!!! The only time I went back to the other site was to tell people about the OCF site. Ginny, The tissue in the Oropharynx region is the same type of tissue that's present in the cervix, anus and penis and is the type of tissue that the HPV virus can and does attack. I don't think the rest of the oral cavity has this type of tissue so that's why it's only been found in that region.
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 |
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
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