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#113020 - 02/23/10 10:53 PM Getting the word out  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
Yesterday when I was at Moffitt with my client/friend and we were there 8 hours, I had plenty of down time and I chose to go to the brochure racks and pull out the OFC brochures I had previously placed and selectively give them to patients waiting to be seen. Each one sparked a conversation and helped to pass the time and hopefully some will visit our website and get help just like we all did.

The reason I mention this is that when I first began posting here there was always a push to order OFC material and get it placed in our CCC's, hospitals, clinics, doctors offices, etc and it's been a while since this topic has been mentioned. I always take OFC material with me and make sure it's available at Moffitt and even my dentist has some in his office so PLEASE order from Megan and let's spread the word.

Megan, if you are reading this I am out and need more.


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.
#113022 - 02/23/10 11:27 PM Re: Getting the word out [Re: davidcpa]  
Joined: Jun 2007
Posts: 5,260
EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
David, I keep the brochurs in my car and take a few with me to all Dr or hospital visits, I see a new PCP tomorrow and will leave a few there too. Good work on your part and this post reminded me to get more brochures. Thanks buddy.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#113030 - 02/24/10 12:20 AM Re: Getting the word out [Re: EzJim]  
Joined: Nov 2007
Posts: 681
Malka Offline
"Above & Beyond" Member (500+ posts)
Malka  Offline
"Above & Beyond" Member (500+ posts)

Joined: Nov 2007
Posts: 681
New Orleans
I give the buttons to all the residents, interns, medical students, technicians, nurses, therapists,office staff and even the new doctors I meet in my many hospital and office visits.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
#113032 - 02/24/10 02:50 AM Re: Getting the word out [Re: Malka]  
Joined: Jun 2008
Posts: 475
Susan Lauria Offline
Platinum Member (300+ posts)
Susan Lauria  Offline
Platinum Member (300+ posts)

Joined: Jun 2008
Posts: 475
New Jersey, United States
Yes, please everyone request them thru Megan and continue to pass around. It does work and we have had many people come to the forum from those brochures.

Every little bit helps!!!


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!
#117461 - 06/04/10 05:14 PM Re: Getting the word out [Re: Susan Lauria]  
Joined: May 2010
Posts: 61
MikeC Offline
Supporting Member (50+ posts)
MikeC  Offline
Supporting Member (50+ posts)

Joined: May 2010
Posts: 61
DFW
I recently received a box of the literature. I dropped most of it off at Baylor DFW today. Next week is cancer awareness week (all kinds). Baylor is setting up several tables on Thursday for various support groups, including SPOHNC. The OCF literature and bracelets will likely be at that table as well. I kept some of the material to pass along to my local Baylor general practice office.


Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.
#117540 - 06/07/10 02:54 AM Re: Getting the word out [Re: MikeC]  
Joined: Jun 2008
Posts: 475
Susan Lauria Offline
Platinum Member (300+ posts)
Susan Lauria  Offline
Platinum Member (300+ posts)

Joined: Jun 2008
Posts: 475
New Jersey, United States
Great Mike. We actualy worked with some students from Baylor. They did a walk associated with Concord Baptist Church a few weeks ago, it was a small walk but I am in touch with several deans from the dental school to possibly make it a bigger event next year. If you get any contacts from the school, let me know. I will contact as well.

Thanks so much!!

Susan


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!
#138631 - 08/25/11 06:56 PM Re: Getting the word out [Re: Susan Lauria]  
Joined: Jun 2011
Posts: 188
Caco Offline
Senior Member (100+ posts)
Caco  Offline
Senior Member (100+ posts)

Joined: Jun 2011
Posts: 188
eastern us
I see materials all over HUP smile


Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
#140065 - 09/16/11 04:33 PM Re: Getting the word out [Re: Caco]  
Joined: Jul 2011
Posts: 48
patrick2128 Offline
Contributing Member (25+ posts)
patrick2128  Offline
Contributing Member (25+ posts)

Joined: Jul 2011
Posts: 48
New York
daivd,
on the subject of getting the word out how about contacting dr oz he just might do a story about oral cancer and HPV. pat


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
#140076 - 09/16/11 10:54 PM Re: Getting the word out [Re: patrick2128]  
Joined: Jun 2007
Posts: 9,541
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,541
PA
Patrick, Dr Oz recently did a show on HPV and oral cancer.

http://www.huliq.com/12079/dr-oz-talks-oral-cancer-caused-hpv-virus-oral-sex


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile
#140077 - 09/16/11 11:29 PM Re: Getting the word out [Re: ChristineB]  
Joined: Jul 2011
Posts: 48
patrick2128 Offline
Contributing Member (25+ posts)
patrick2128  Offline
Contributing Member (25+ posts)

Joined: Jul 2011
Posts: 48
New York
as usual great info. my wife says HPV wasn't around in the 70's if not when did it raise it's ugly head thanks again pat


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
#140092 - 09/17/11 03:35 AM Re: Getting the word out [Re: patrick2128]  
Joined: Mar 2002
Posts: 4,734
Brian Hill Offline
OCF Founder
Brian Hill  Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,734
Boise, ID and Portland, OR
Patrick - HPV has been with us for a very long time. Going back to 1948 when at its peak destructiveness versions 16 and 18 were cause enough cervical cancers to make it the number one killer of women in the US that year. (It was around long before then) HPV in a retrospective study that OCF did with Maura Gillison published in the Journal of Oncology really started to get legs in the posterior mouth in the late 60"s and early 70's. This is most likely due to the quickly changing sexual behaviors that were taking place in the developed world during that period. Of course those behaviors have never gone back to the days of Ozzie and Harriet relationships.

Looking at tissue samples from the SEER database we were able to plot the steady increase in oral HPV cancers from the early 70's until today, and from that drew a trend line to 2020 which shows an ever increasing rapid ramp up of these cancers. Of course you have likely read it here before, but in this generation we can't do anything about this, but for our children and grand children the cervical cancer vaccine is likely our only hope of turning this epidemic around.


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.
#140103 - 09/17/11 12:07 PM Re: Getting the word out [Re: Brian Hill]  
Joined: May 2006
Posts: 719
Leslie B Offline
"Above & Beyond" Member (500+ posts)
Leslie B  Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2006
Posts: 719
Washington DC
Links to the Dr. Oz show clips: Part 1, Part 2, Part 3, Part 4, Part 5.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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