#68773 01-29-2008 01:56 PM | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | OP  Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Received my packet of OCF brochures yesterday! Just in time for my ENT's first visit of the year... he was grateful, and very interested, as was his staff, and the funny (sad) part is no one knew about the foundation. Of course as an ENT he sees much more than oral cancer, and it's easy, as he said, to get 'out of the loop,' so, we just helped him and several others get 'in the loop.' Today I made a trip to two dentists in town, both friends of mine, and I see another tomorrow, as well as my PCP. Lordy it's great to get the word out! Having those brochures in their offices may help someone who needs it... at least they have them there in case someone has questions or no where to turn. The lack of available information down here was more than astonishing, it was shocking. Maybe we can get these South Georgia people straightened out... tee hee.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | John,, where id you get the brochures? I could put them in the hospitals and Dr offices I have been to way to much lately.
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 | Jim,
You get them from the OCF. Brian will see that you get a good supply. I was the first to put them at Moffitt and 3 local dentist offices. I have refilled them when they go empty.
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: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Jim... OCF Main Site, go to 'Store,' then find 'Support Products.' You can get the 'about us' brochures for free, as well as the cards. If I'm not mistaken Brian sends them to you personally, maybe along with a little surprise. How are things with you pal?
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Doing good John. Just got back from rads and am making turkey meatballs with sauce. They smell good but no guarantee. LOL But they should be tender enough for these gums.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks guys, I already mentioned it to the Dr and he says go for it.
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 just had a call from a dear friend in Baltimore who is part of a group which visits patients in the area hospitals and people who are there for consultations and helps them and their families with many issues. I told her a few basic facts about OC and gave her the OCF website address to share.
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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