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#184014 08-05-2014 12:35 PM
Joined: Jun 2007
Posts: 10,507
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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
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"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
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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Joined: Nov 2006
Posts: 2,671
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
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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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)
OP Offline
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)
Offline
"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
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
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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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
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)
OP Offline
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
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