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Joined: Mar 2002
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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
As you can all see, we have a new format message board, much more sophisticated than our old software, and one that runs 100 times faster. I hope that this continues to be the most active and supportive board for people with our cancer out there. The combination of this new software, and the compassionate people who make up the community of posters are a winning combination.

But what I want everyone that comes here to get, is that this new message board software, and the paid time it took to migrate all the thousands of old postings over to it by the techs at the company that owns it, the customization of the software for our particular use, and the new server that it resides on, was made possible by one donation by multi-Emmy and Tony award winning actress Blythe Danner. The very same person that has allowed OCF to partner with the Paltrow family in the new Bruce Paltrow Fund which will be announced to the world in the next month. Her recent personal donation to the foundation is how this came to be.

I would very much appreciate it if on this thread, patients, caregivers, and survivors would post to her how important this forum is to all of you; in what ways it changes your world, offers you a support mechanism, benefits your emotional well being, increases understanding of the path that we all go through, and more.

Without benevolent people like Ms. Danner who care to make a difference in the world - and are willing to open their check book up to make things happen - OCF could not accomplish the things that we do. I trust you all feel the same way as I do about this community on the forum, and will let her know what she is making possible. Thanks.


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: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Dear Ms. Danner,

As I do every night, I have just signed onto the OCF board and was greeted with the new forum layout and software, which I understand was made possible by your extreme generosity. I personally want to thank you for making this possible.

For the past 2 and a half years the OCF has become a daily part of my life. It has allowed me to reach out to people all over the world and enabled me to, in some small way, try to help fellow survivors of oral cancer get answers to some of their questions. As an oral cancer survivor and a practicing dentist, the OCF has provided me with the opportunity to help others, learn things that I didn't know about oral cancer, and become friends with some absolutely wonderful people all over the United States and all over the world. I truly feel being a member has made me a better person.

I would also like to thank you for partnering with us through the Bruce Paltrow Fund. There is no doubt in my mind that your association with the OCF will help to bring Oral Cancer and the need for early detection to the public's eyes and ears. We will be forever appreciative of your generosity.

Jerry Wilck DDS


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Joined: Nov 2007
Posts: 681
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Nov 2007
Posts: 681
Dear Ms. Danner,

Thank you for your interest and support of the OCF.
As a survivor of oral cancer and a resident of New Orleans, I will tell you that when someone is faced with an unexpected happening which turns his life around, all help and support is deeply apppreciated.

I am now, after my cancer treatments, considering reconstructive surgey and while looking for information last month, found the OCF site. The amount of information and support here is overwhelming. Thank you for providing the funding for this new message board. I just began to explore it and felt the need to thank you immediatly.

I am one of the fortunate people whose dentist was vigilant and only required surgery for my cancer. I knew that oral cancer can be vicious, but I had no idea how easy it is to detect. Inspired by the recent news of the establishment of the Bruce Paltrow Fund, I have enrolled as a volunteer to help the OCF in any way I can. It is with great gratitude that I thank you and your family for inspiring me to turn an unfortunate experience into a positive force. May you be rewarded for your efforts by a dramatic increase in early detection of oral cancer, and lives saved as a result.

Malka L



SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
Malka #66246 12-27-2007 07:57 PM
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Hi Ms. Danner,
I'm a 46 year old mother of 7 daughters and I've been battling oral cancer for 4 and a half years now. Before my diagnosis, I didn't even know it existed. I've had my jaw removed and on October 4th, I had surgery to remove part of my tongue for a recurrence after being cancer free for four years.

As I'm sure you know, this cancer is a "family affair" and has such long reaching arms that it leaves no one untouched. My husband, daughters, and I pray every day that I will survive this new cancer as I did the first cancer. This board HELPS us survive, it makes our fears seem smaller and with new knowledge, feel more powerful. Thank you for helping to keep this board going.

Sincerely,
Minnie Ashworth and Family


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
Patient Advocate (1000+ posts)
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"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
Dear Ms. Danner:

Thanks to you, oral cancer patients world wide are now able to access information from those who have "been there" - a huge boost to all of us when dealing with our various health care systems, and more supportive than many professionals or sometimes even our own personal support networks can manage.

You have helped provide a facility that guides patients to their best course of action. We Thank you.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Joined: May 2007
Posts: 632
"Above & Beyond" Member (300+ posts)
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"Above & Beyond" Member (300+ posts)

Joined: May 2007
Posts: 632
Dear Ms. Danner,

I log on to this site every day--it helps me to know that there are people out there who care about each other as we go through the discomfort, inconvenience, pain, sadness and anger which this disease brings.

The knowledge and support provided by the members in a myriad different ways will now continue to be made accessible to many more people thanks to such a generous and kind donation made by yourself.
Thank you for becoming part of our community by this caring gesture.

Brenda, United Kingdom


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Blythe,

Thanks for helping fund one of the most valuable cancer sites on the Web. I did not find this site until after my treatment was finished, but it still helped me tremendously - both physically and mentally. Unfortunately there will be many others to follow in my footsteps, and who will need this site. Without monetary support, and people like you who care, that would not be possible.



David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jan 2004
Posts: 104
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Jan 2004
Posts: 104
Hello Ms. Danner and all who visit this site

The new forum layout and software are awesome!
Thank you so very much for helping us to continue to connect with each other. It is truly a lifeline while being faced with this disease. The knowledge and support I receive from this site is a Godsend. I am able to share the information from others who have similar situations with my dad, it seems to be a comfort to him as well. His comfort is invaluable to me.

You have touched our family personally with your gift.
We are both humbled, and grateful.

Kindest regards,
Deb


Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"

Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Dear Ms. Danner -
Thank you for your most generous gift to the Oral Cancer Foundation, and how wonderful that because of your caring and compassion, many, many, more survivors and their loved ones can find the information and support they so desperately need. OCF has been a lifesaver for me. When we first found this forum, my son had been through surgery and just started his Radiation Tx. To see him having to experience such physical suffering and emotional anguish was heartbreaking. But through OCF, I found the latest information, practical advice, and suggestions to get through the many problems associated with the treatments. I also found compassion and caring from people who had been there before me, and really knew what I was experiencing. Thank you so much for being a part of making this great forum possible!


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: Jun 2007
Posts: 214
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Jun 2007
Posts: 214
Dear Ms. Danner,
Many thanks for your most generous donation to the OFC. It is the most comprehensive site on the internet in regards to oral cancer. I am a 42 year old mother of two, and am 6 months out from my treatment. I believe that my diagnosis was delayed by three years because my doctors did not have the awareness they should have about this disease. As a young, fit, healthy woman, I slipped through the cracks despite being under several doctors care at the beginning of my illness. I did not fit the 'profile' of an oral cancer patient. It is my hope that your genorosity can help bring more attention to this devastating disease, thereby assuring others of earlier diagnosis. As other members have said, the information found on this forum is priceless and hugely appreciated. Gratefully yours, Teresa


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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