| 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 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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | 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
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | 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
| | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 475 | 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!
| | | | Joined: May 2010 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2010 Posts: 61 | 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.
| | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 475 | 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!
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | I see materials all over HUP
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!
| | | | Joined: Jul 2011 Posts: 48 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2011 Posts: 48 | 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.
| | | | 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 | 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 2011 Posts: 48 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2011 Posts: 48 | 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.
| | |
Forums23 Topics18,170 Posts196,930 Members13,105 | Most Online458 Jan 16th, 2020 | | | |