| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | WE are listed 1st followed by the ones that have the lowest operating budget to the highest.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Got one as well. Email would have gone to all those who posted a review. We done good !!!! 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 |
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | So did we get any money or just recognition? Whichever it is still good to be a winner.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | This wasn't about money from the organizer foundation, it was about getting recognition. Now we can use that award to tell people we are worthy of their support who are outside the world of oral cancer. Expect to see a press release nationally in the next week out of OCF to announce our receiving the award. Then we will be using it when we contact other benevolent organizations looking for grants or financial support. It's a function of credibility - like our science advisory board. A tool we hope to use to get noticed as an organization that has metrics that show that unlike (especially the really big guys) many organizations, we get lots done for the little money, human resources, and infrastructure we have to work with. In essence we're a good investment for their charity dollars.
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.
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