#92398 03-23-2009 01:19 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I took quite a few brochures to Pennsylvania with me this morning and put them in strategic places like near the coffee pots and areas like that. I saw a couple of people reading them when I was leaving.
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | That is great. I have left them everywhere and people actually called me with questions, I also left my OCF business cards so they can contact me. They are getting a really good response.
One of our volunteer projects will be getting an article to the local newspapers in their state for oc awareness week in April. Just some facts about oc and info on OCF website. Trying to get more PR for OCF.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Susan, I have my stash in the car for tomorrow mornings trip to the CCC .
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Thats where I keep mine as well, because you never know what comes up during the day! Thanks Jim!
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | No thanks needed but You sure are welcome.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Hey be careful with that word stash...in my college days that meant something totally different.
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) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL Understood David,, mums the word and stash we change to give aways.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Susan
What are the dates for OC awareness week? Maybe I can get a couple of things together here by then
Thanks
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hi Patty, Oc awareness week is April 13-19th. If anyone needs more brochures or anything else, just contact Megan at [email protected]. Hopefully I will be mailing out the oc article for the newspapers shortly!! Take care 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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Susan,
When do you expect the letter to be ready? I will be out of town from the 7th through the 19th which overlaps the awareness week. Is information about the walks included? We should each make a 'press kit" with the brochures, a few sample buttons and our cards. IN addition to newspapers, I have contacts for several dental and medical resources.
Please let us know so we can order what we need from Meagan in time.
Thanks for your tireless work and great enthuiasm.
Malka
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.
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