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#184014 08-05-2014 12:35 PM
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Thanks for the recent reviews on Great Nonprofits! By working together, OCF has become one of the 2014 Top-Rated Nonprofits.

Great job, thank you!!!!

OCF 2014 Top-Rated Great Nonprofits Award


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
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Thanks for your efforts too, Christine.


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: Jan 2013
Posts: 1,291
Likes: 1
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Great news! Glad sufficient prods and pokes in the A got the ratings up! lol


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Great!! I knew we could do it!


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: Nov 2009
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"OCF Down Under, Kiwi"
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Christine, do you know of any similar sites for ovarian/peritoneal cancer. You seem to know a lot about these things and I've searched with no success, even though I used a forum based at the University of Pennsylvania back in 1997. I'm in a cancer support group with people with different cancers. Breast cancer and melanoma seem to have foundations and online discussion but ovarian-type cancers?


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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
There may be something on the American Cancer Society's website. They have a forum for all kinds of different cancers. Ive heard their forum is a pale comparison of what members experience with OCF. Things like monitoring and incorrect info arent a priority like it is here. If I come across anything like what you are looking for in any of my travels I will let you know.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Thanks. Yes, there are other solid looking foundations but without the patient forum facilities we have here.


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: Jan 2013
Posts: 1,291
Likes: 1
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Likes: 1
[quote]Ive heard their forum is a pale comparison of what members experience with OCF. Things like monitoring and incorrect info arent a priority like it is here. [/quote]Christine,
Naturally, you have a bias to OCF and I too, like many here, feel OCF is a fantastic gathering place for well vetted information and community sharing.

Being diagnosed with cancer affects people in different ways. Some react proactively seeking to learn as much as they can while others stick their head in the sand like an ostrich and everything in between.

While you offer some OCF strengths, other boards offer different strengths so it depends what one needs and seeks as to which pales to which.

Each forum has its own rules for posting and moderation. What serves well for one may not for another.

Just wanted to reassure others that it is fine to participate in other forums if it better suits what one needs while experiencing cancer up close.

Thanks for all OCF and volunteers like you do everyday to make this place just super!

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
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In respect to Don's post, there are forums for cancers in general that have strong religious aspects to them, others that are geared towards alternative treatments, and some which take a shotgun approach to it all. As these are subjects are some which we specifically ask people not to discuss here, clearly if those were your desires in talking to someone else, another forum would be better suited.

We learned long ago that we cannot be everything to everyone. The two things that we can be; are true to current scientific thinking, and supportive of people in emotional need.

I also feel very strongly about people's privacy, and the information that they share. Unlike Facebook forums we will not harvest any of that nor like they do sell it to others. Even in the Not for Profit world there are organizations that do seek your information, as there is a whole lot of money to be made in doing so. We intentionally do not collect things that can be used in that manner.

Last edited by Brian Hill; 08-26-2014 03:50 PM.

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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
The weaknesses I was referring to in other forums is their lack of moderating. This results in having advertising posts and promoting false cures which can be harmful possibly deadly to readers if they follow dangerous untested remedies.

Yes of course I am biased! Im actually very proud of the OCF forum, its standards, dedication to honesty and integrity to its members. After several years of spending hours of my time every single day of the year (no matter what else I need to do on any particular day) moderating this board I am too familiar with what can happen when forums are not constantly watched. Within a few days they can become overrun with ads for Prada shoes and the latest diet fad. Ive also seen other groups where the tone isnt always very friendly. In the end, every board is different (just like we all are) and what works here doesnt always work elsewhere.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"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)
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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. smile

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)
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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.)



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Likes: 52
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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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