| Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Great post, Dave!
I just feel so grateful that I have been a part of this community.
I hope to give back what I have so generously been given.
Thank you to all of you for all that you have done for me and continue to do each day for the group.
Brian Hill, you are an inspiration to us all and I know that I am not alone when I say "thank you" for starting The Oral Cancer Foundation and continuing to make it a pillar in the OHANC community.
Love in OCF, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2014 Posts: 79 | Would just like to say thank you too , I visit you all everyday, I feel like something is missing if I don't log in. My local GP asks me where I get my information from as I learn far more here from my friends then anywhere else. Having 3 month checks now with the consultant but feel safe here inbetween visits. Finished my treatment 12 months ago ..... Some very dark times , but you saw me through. Thank you all x
Di 47 none smoker / drinker
T4 SCC left tonsil 1 Cistplatin,30 RAD finished treatment on 4/12/2013 Trismus First MRI scan appears clear TX NG tube 9 weeks acute vommiting, syringe driver 9weeks 2 month checks | | | | 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 | I too would like to add my thanks to ALL of you that come here routinely to help others. OCF works hard in ways that most people do not hear much about, I am in the halls of the NIH and the NCI with regularity lobbying for various important trials to get funding, arguing with members of Congress and the Senate to see that funding for NIH/NCI does not get cut further, after several years of cutbacks, and the thankless task of working with for profit insurance companies to try to get more coverage of restorations that they do not wish to pay for. I sit on two NCI oversight committees, one in the very exciting area of immuotheraputics in head and neck cancers. I have been asked to sit on a third, which I will have to say yes or no to this coming week, which is a very early funding approval committee, that decides what moves forward with funding in head and neck and what does not. Because of the huge extra workload these impose on me, and my already stretched time for OCF other obligations, I am still weighing adding another thing to my workload. But it is a privilege to be asked, and it says something about OCF's reputation as much as my own. There is also the writing of tons of articles for the public, and as a being a respected source of vetted information which is often quoted in articles, and proofing many journalists writings from public media for accuracy before they put them out in the world. We don't hoop and holler much about this work, but it is a huge and necessary part of OCF's mission and obligation to the community of people we serve, let alone the American public that gets far too much bad information about HPV and our disease. But when you look at OCF and what it has become over the years, the crown jewel in the organization is this support group. Over 15 years it has seen many come and go with 11,000 registered members. But literally hundreds of thousands have visited and read the boards without signing up and are not reflected in that number. You can see them in the wings at any time by looking at the "whose on line" link, and view all the people at any given moment from around the world that are reading your writings, your stories of hope and pain, and loss for sure; but also the stories of success, healing and love. We have had many come and go, some drift away as they wish to put this disease experience out of their minds and get on with life� but others, a very special few, have been here for years to see the path of those behind them made just a bit easier. That a fear is appeased, that an uncertainty is put to rest. There are many, but without a doubt Christine - who diligently each day cleans off the spammers, and rides herd on those that might be less than polite, is always there to welcome the new, and with her many years of learning about the disease, aid those in trouble. That you all call her out for her dedication pleases me, she certainly deserves it. But newbie or old timer, you are all OCF family. We share each others pain or happiness at the end of a journey. We all understand what bonds us to each other in a way that outsiders cannot understand or experience. I just wanted to thank you all for giving of yourselves to make this a community that is safe, knowledgable, caring, and gives without conditions for that concern for others. You are all so remarkable. To give you an idea what you have created, last month the head and neck staff at Johns Hopkins designated the OCF support group the only one that they would recommend to all their patients. While they have once a month meetings at the clinic, they recognize the need for additional support, and after review of many years of postings, they feel comfortable that OCF is a venue that they can trust to be free from misinformation, and because of its anonymous nature, safe for their patients and their families. Congratulations. You all built this.
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. | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Thank you for your hard work and sacrifice, Brian, for starting the group and persevering through the years. Wishing you and your wife and very Merry Christmas and a great New Year. Now, I think I can give myself a little pat on the back too
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Wow, Brian. I have tears in my eyes and feel a sense of pride to be part of such an exceptional group of individuals.
I am so happy to learn of the additional congressional and lobbying work that you have been doing for OCF. I think it's safe to say that we are all grateful for your hard work and the credibility that you and others in OCF have built in the medical and political communities.
It must be a difficult decision whether or not to take on the additional committee. It sounds like an important opportunity that might give us a hand up the great wall of lobbying efforts that we must climb. I hope that you can peacefully come to the right decision for YOU. Your health and well-being are just as important as the efforts you and many others put forth in OCF.
These are exciting times in cancer research with better treatment techniques and higher cure rates on the horizon!
Best wishes! We all love and appreciate you more than you know!
Love in OCF, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | We don't often hear about all the "behind the scenes" work and efforts that go in to keeping OCF constantly improving and becoming the ultimate "go to" place for information and the latest in oral cancer research. That you, Brian - have been asked to sit on even a third committee is indeed an honor and it is not surprising in view of all that you do in sharing your knowledge not only with all of us here, but with the various organizations and entities that ask you to share even more with them. I would like to echo what Kerri has said and hope that whatever decision you make is the best one for YOU. We all care about your health and well-being and all that you do.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | I don't think an online support forum can really be effective without a ChristineB poster (or multiple such posters). She is quite simply - amazing! She is knowledgeable, compassionate, strong, resilient and available.
Thanks to Dave for giving voice to what makes this forum so special and for his shout out to ChristineB.
Sophie H.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Christine has truly given my advice when I need it most. While my mother is so sick and in so much pain Christine advised me on how to handle the pain meds and making sure the calorie intake was big enough.
Thanks Christine you are a blessing. Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | I have been a "lurker" these last months and posted very little, but I realize how much I owe to all of you for what you do everyday--Brian, Christine, David.....Thank You.
Mary Caregiver to husband, 60 Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+ Oct '12 Sub.Gland transfer Nov-Dec '12 IMRT x 33 + cisplatin x7 March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED) April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16 9/13: 33 rounds IMRT to lungs; carboplatinx7 CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC 30 rounds IMRT to left lung; treatment ended 5/29/14 Sept 2014--CT clear; December 2014 CT clear
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