Patient / Survivor Header
Page 1 of 2 1 2 >
Topic Options
#113020 - 02/23/10 10:53 PM Getting the word out
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8309
Loc: 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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

Top
#113022 - 02/23/10 11:27 PM Re: Getting the word out [Re: davidcpa]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: 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

Top
#113030 - 02/24/10 12:20 AM Re: Getting the word out [Re: EzJim]
Malka Offline
"Above & Beyond" Member (500+ posts)

Registered: 11/26/07
Posts: 681
Loc: 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 7/27/05. Renal cancer w. partial nephrectomy Jan04. 4/08, breast cancer discovered in routine mammogram. Sucessful lumpectomy, sentinal nodes clear. RT only. Reconstruction of mandible w fibula free flap Jan 5/09. Now cancer free.
Support OCF

Top
#113032 - 02/24/10 02:50 AM Re: Getting the word out [Re: Malka]
Susan Lauria Offline
Platinum Member (300+ posts)

Registered: 06/25/08
Posts: 472
Loc: 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!

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

Registered: 05/08/10
Posts: 50
Loc: 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.

Top
#117540 - 06/07/10 02:54 AM Re: Getting the word out [Re: MikeC]
Susan Lauria Offline
Platinum Member (300+ posts)

Registered: 06/25/08
Posts: 472
Loc: 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!

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

Registered: 06/24/11
Posts: 188
Loc: 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!

Top
#140065 - 09/16/11 04:33 PM Re: Getting the word out [Re: Caco]
patrick2128 Offline
Contributing Member (25+ posts)

Registered: 07/11/11
Posts: 48
Loc: 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.

Top
#140076 - 09/16/11 10:54 PM Re: Getting the word out [Re: patrick2128]
Happy Birthday ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8342
Loc: 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

Top
#140077 - 09/16/11 11:29 PM Re: Getting the word out [Re: ChristineB]
patrick2128 Offline
Contributing Member (25+ posts)

Registered: 07/11/11
Posts: 48
Loc: 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.

Top
Page 1 of 2 1 2 >


Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
2 registered (MrStressed88, PaulB), 51 Guests and 5 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
10060 Members
23 Forums
15933 Topics
180962 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
ChristineB 8342
davidcpa 8309
EzJim 5260
Cheryld 4863
Brian Hill 4665
October
M Tu W Th F Sa Su
1 2 3 4 5
6 7 8 9 10 11 12
13 14 15 16 17 18 19
20 21 22 23 24 25 26
27 28 29 30 31
Newest Members
joeymeow13, Turtle, AmandaP, RhoeDogg, jersan
10059 Registered Users