| | 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 | WOW�  That really should grab the attention of so many people and bring awareness to the public about Oral Cancer. Well done and thanks for everything you do Brian. Also a thank you to Michael Douglas. Gabriele
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Excellent work, Brian and Micheal!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | WOWEE! I LOVE THIS! So exciting to see OCF getting out there with Michael Douglas support! Brian, many thanks to you for starting this and for your dedication. This site has been a lifesaver for me and Clark.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Brian has also gotten some very heavy-hitters behind the camera as well. I'm in the biz and the names are indeed impressive. All around fantastic bit of publicity for oral cancer awareness!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Excellent Press Release!! Brian Hill Rules!!!!
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Brian,
Excellent news. You say you aren't a "Hero"...where would all the people on the forum be without you. You are our "Hero". Thank you for being you and helping all of us with and without Oral Cancer.
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Hero, example, leader, friend...all descriptors that come to mind
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Brian, Thanks and Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | OK guys, please quit. I'm very appreciative of the comments. You have to know that this is a labor of love, and what a privilege it is at this point in my life to work at an endeavor that means something to others. I am pleased that OCF is having so much positive impact. But like I always say, I am just one part of many that make it all work. This year we have had an extraordinary group of returning and new volunteers put on walks for us around the country. Those are funding new HPV research this year, and much more, like the production costs to get the Douglas PSA actually on the air. Most of all, at this stage of my life, I am grateful for the camaraderie that I am able to share with fellow travelers on the cancer path, with researchers, and with the doctors that work in the trenches. You all enrich my life in ways that you likely do not fathom. I thought after Vietnam, that I would never again feel that intensity of brotherhood, that no relationship would have the depth, or often unspoken bond shared with a fire tested brother in arms. But I was wrong. My OCF relationships, many borne of the same association with a real battle for survival no less fearsome than with a human adversary, share many of the same qualities and feelings. Their emotional impact equally significant and protracted. OCF has its own legs now, and the security of knowing that it will continue past me is a true joy. The many many supporters that donate, each to their on level of ability, are continuing to grow. The increasingly more knowledgeable patient advocates here on the forums, are answering and supporting the increased flow of participants as OCF becomes more visible nationally. The foundation is firmly on the map, and with invitations to be part of the decision making at the NCI, to have an impact and be thought of by the CDC as an organization that they have to get input from when policy is on the table that relates to our disease; these are all indicators that your voices are being heard, and that it is an organization of relevance. One day, not in my lifetime unfortunately, OCF will hopefully close its doors, not for lack of donors, nor volunteers, nor advocates that are willing to tilt at the windmills, but because we have a firm handle on oral cancer, and the incidence becomes minimal. All of you are that future.
Last edited by Brian Hill; 05-15-2012 06:51 PM. Reason: added thought
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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