| Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Your pride is justified, Christine and your work is very much appreciated. I remember an ovarian cancer forum which had similar strict scientific standards with links to the latest research. This was way back in 96/97 when the internet was new. Over the years I lost touch with it and now it seems to have disappeared. I used to access it via a dial-up modem ...
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Believe it or not, the Internet started in the late 60's, although just used by the military (ARAPNET). Then Al Gore tried to take credit in 94. The rest...as they say...is history. Alpaca, I didn't even know how to spell forum back then! My mother battled ovarian cancer 98-2000 and a lot of communications with her doctors was via email and I sent digital photos for diagnosis of issues. They thought that was pretty leading edge back then. The only forums I found in 2003 were Delphi and About and it was really more like a chat room. One thing I really liked about OCF, besides the science and neutrality with respect to politics and religion, was not having all the ads and annoying popups. I will chime in on many political or religious discussions but I don't want to have to argue those topics while trying to focus on all the oral cancer things. I even joined OCF after treatment and found I learned everything I needed to know to get through recovery here.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I�ve also had occasion to visit other forums, specifically re robotic hysterectomy surgery. It did not have the ease of navigation that OCF has and was so overrun with ads, that I soon became discouraged and did my own research, checking with my two doctors about their research and qualifications before making a decision.
In the 8 years since I joined OCF, I�ve learned that I can always depend on the very latest news and scientific research. If anything �new� appears from other sources, chances are that OCF has found it and already commented on it. When I came to OCF, I found accurate information and support from people who cared about my son and his oral cancer. I, too and proud of OCF and all the people (visible and behind the scenes) who make it what it is, and for all the reasons stated in the two posts above by Brian and Christine. If that makes me �biased� � maybe so, but I like to think of it as being well informed and educated.
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: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | I thank all of you for your comments, I am pleased that people find value in it all. I am greatly indebted to Christine for agreeing to be the face of OCF, and our representative here and away at trades shows and walks, as she took a huge load off my plate. So did all the other regulars who I won't mention by name, but who dedicate part of their week to helping someone behind them on the path. While I live immersed in the research world most of my days, so I by osmosis, organically learn a great deal about our disease, I am always impressed at the quality of information that long-term posters have absorbed through many years of discussions, and how true to the science they generally are. All of you that come back to help others are heroes in my book, and those of you that have become, even if by proxy, students of the scientific parts of it all so that you can speak with accuracy, are the backbone of what I always hoped the support group would be. When combined with those whose strengths are the emotional support aspect of it all, you guys are the best of OCF.
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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