#49672 12-03-2004 01:04 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | In 2005 OCF will be involved in several very public events. A walk to raise awareness in VA (thank you Minnie for taking the reigns of this idea with your 400 cheerleaders), numerous free public screening events in cooperation with dental schools all around the US on the weekend of April 9-10, and a celebrity fundraiser golf tournament to be held in Malibu in memory of Bruce Paltrow, benefiting OCF. We need to develop some of those catchy sayings that get tied to organizations and events. Breast cancer has "Walk for a cure." Lance Armstrong has his "LiveStrong" mantra on everything, etc. OCF needs to have a similar set of cut lines that we tie to ourselves. With all the creative minds out there, I thought I would post this so people could put their ideas into the project. We have some that ring nicely for our newly diagnosed patient materials such as "Strive to Survive & Thrive
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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#49673 12-03-2004 06:25 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I almost posted something like this Brian but wanted it to come from you. I agree with Brian that we need one saying, one color, one THING that will make people think of Oral Cancer and what we are trying to accomplish.
I love the breast cancer theme "promise", the promise to not stop until a cure is found. We need something like that, even if we piggy back on someone elses idea, connect ourselves in a way that also compliments their campaign. I have tossed around a few ideas but I am simply not the creative type. I like the word "Believe". We could use that to hook onto the "Promise" campaign. We "Believe" there will be a cure someday. We can achieve if we believe. Something like that. I also like the idea of having something that is related to our mouth, voice, words, etc. It's where oral cancer hits us. Raising our Voices, Voices Raised, something like that.
I think we need a color also and Brian is looking into any that are left over, not already being used.
Ok everyone, shoot out your ideas, brainstorm, this could be tons of fun and at the same time make history.
Minnie
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.
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#49674 12-04-2004 03:53 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hey Minnie, I like the Voice theme. I will put on my thinking cap. Also, when I went to the Relay for Life, they were selling little bows for each type of cancer, I bought the oral cancer one and it was a burgandy or dark maroon color. Not sure where the color came from, but that is what they had for us. I know breast cancer has a pink bracelet that says "Living in Pink", and Bone Marrow/Leukemia has the blue one that says "Life is a Team Sport" (I really like that one). It would be awesome if we had one! Thanks for all that you are doing, looking forward to April in Virginia!!! Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#49675 12-04-2004 02:50 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | The official oral cancer awareness "ribbon" colors are red/burgundy and ivory. There is another site that is selling the pins. I can only assume some of the monies earned go to the support of the site/organization...
I really like the Voice theme, too.
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#49676 12-04-2004 04:46 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Well, let us start throwing out ideas. I agree with Minnie, Carol and Uptown Girl with a theme involving "Voice". Sometimes the least creative idea can jump-start the real artists.  "Voices of Promise". Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
#49677 12-04-2004 06:31 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | "Voices for Life, or Voices in love" are also good. It would be great to have our color and theme saying. I wear the LiveStrong bracelet everyday...would love to wear one representing oral cancer specifically!
Thanks Brian for all the great things you think of!!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#49678 12-05-2004 02:45 AM | Joined: Mar 2004 Posts: 98 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 98 |
Was Primary caregiver to my mom who had stage IV, SCC, Supraglottic with Mets to 4 nodes. Diagnosed Feb 04, died unexpectedly from complications from treatment December 17, 2004.
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#49679 12-05-2004 05:45 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 |
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#49680 12-05-2004 07:02 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | I too, like the Voices idea, but feel it has more oomph with "of" or "in" instead of "for". It has a more positive ring for for me. So like Jack said Voices of Promise, Voices of Hope, Voices of Tomorrow? Voices of Promise and Hope for Tomorrow?
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#49681 12-05-2004 07:07 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Somewhat off topic...Just because it is in my nature, and I occaisionally slip into my Englisp, Voithes of Promith? Please, no one be offended, I am playing here! 
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#49682 12-05-2004 07:54 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Lisa
no problem I would not suggest something I couldn't say, 14 wks from surgery and my mouth and my brain have very little communication
Sunshine...love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#49683 12-05-2004 08:10 AM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | with an addendum
...Believe!
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
#49684 12-05-2004 02:35 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi all,
Talking of "voices", these are the lyrics of an Aussie hit song by John Farnham, which I tend to think are pertinent.....and a quote from something I wrote in one of my stories - "Support (for cancer victims) appears mostly concentrated on breast, prostrate and brain cancers. It reminds me of that proverb, 'To be seen and not heard'. Yes, boobs, balls and brains were definitely more important than speech!"
John Farhnam - "You're The Voice"
We have the chance to turn the pages over
We can write what we want to write
We gotta make ends meet, before we get much older
We're all someone's daughter
We're all someone's son
How long can we look at each other
Down the barrel of a gun?
You're the voice, try and understand it
Make a noise and make it clear
Oh-wo-wo-wo, oh-wo-wo-wo
We're not gonna sit in silence
We're not gonna live with fear
Oh-wo-wo-wo, oh-wo-wo-wo
This time, we know we all can stand together
With the power to be powerful
Believing we can make it better
We're all someone's daughter
We're all someone's son
How long can we look at each other
Down the barrel of a gun?
You're the voice, try and understand it
Make a noise and make it clear
Oh-wo-wo-wo, oh-wo-wo-wo
We're not gonna sit in silence
We're not gonna live with fear
Oh-wo-wo-wo, oh-wo-wo-wo
ooooh We're all someone's daughter
We're all someone's son
How long can we look at each other
Down the barrel of a gun?
You're the voice, try and understand it
Make a noise and make it clear
Oh-wo-wo-wo, oh-wo-wo-wo
We're not gonna sit in silence
We're not gonna live with fear
Oh-wo-wo-wo, oh-wo-wo-wo (X3)
We're not gonna sit in silence
We're not gonna live with fear
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#49685 12-05-2004 03:32 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I love the song Tizz.....it really moved me. Thank you for sending it.
I like
Voices Raised.........No more silence, No more fear.
Voices......... Voices Of Inspirational Cancer Expertise and Survivorship.
I also like the burgandy color.
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.
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#49686 12-05-2004 03:38 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Any good artists on the board?? I would love to see a very simple, plain pic of a round, open mouth with the word "voices" floating out of it. Or the phrase, "no more silence, no more fear".
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.
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#49687 12-05-2004 03:38 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | Tizz! That is a really cool song (er, lyrics I mean - the tune might very well suck)! I love this post and thank you - you, too Lisa... That was precious.
I actually like the "You're the Voice" slogan. We're trying to get the word out on the progress, research, awareness and rely on everyone to spread the word... What about "You're the Voice, speak out until there's a cure..." (you know what I mean. That one's kind of dumb, but the concept...)
Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#49688 12-05-2004 07:40 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi Susan,
The song is very powerful, good production; John Farnham has a very strong voice - it should be available for download (gotta be careful now, as we know), and a big hit in Oz for quite some time, BMG Records, and also Robbie Williams covered the song.
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#49689 12-06-2004 07:05 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | I like the voice concept, too. How about -
OCF, the Voice of Hope, together we can make a difference. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#49690 12-06-2004 11:32 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | My contribution:
One Voice for Life
Helen
RHTonsil SCC Stage IV tx completed May 03
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#49691 12-06-2004 12:40 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Gosh, they are all such good suggestions, it will be difficult narrowing it down to one!! SMILE!!! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#49692 12-07-2004 05:39 AM | 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 | I bet Rod Stewart would even contribute a jingle from one of his songs. I'll have to search some of his lyrics for "voice" stuff.
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
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#49693 12-07-2004 11:11 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Ed,
Surely you aren't thinking of Hot Tongues?
I need a good talking to, cannot get serious this week...
Lisa
PS Hey, how bout them Hawks?
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#49694 12-07-2004 08:56 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Litha,Lisa, lisa!
lol, my kids still tease me about "going to the thtore for thum milk"
I am going to be laid up over Xmas with a surgery date of Dec 22 so I will apply my latent artist skills to the wonderful ideas for a logo -iths better than talking about it!
Take care
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#49695 12-08-2004 01:36 AM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Hi All,
Keeping it rolling,
"Voices of Life ... Believe"
Whatever is chosen, I will wear it with pride and humility.
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides | | |
#49696 12-08-2004 06:46 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hey Jack, good one, like it a lot! I am with you, whatever is chosen, I, too will wear with pride and humility!!! God Bless You! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#49697 12-08-2004 08:17 AM | 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 | Lisa,
The more I read your posts (and now Maria's, too), I have reached the realization that Tweety Bird is an oral cancer survivor, too.
ROCK CHALK JAYHAWKS! They're rockin' and a rollin' in Lawrence, baby.
Ed
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
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#49698 12-10-2004 04:35 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Another possibility: Let Your Voice Be Heard!
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#49699 12-17-2004 05:55 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Hello ALL,
Virginia walk is coming up quicker than we think.
How about some "words"
Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides | | |
#49700 01-02-2005 12:04 PM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | VOICES OF COURAGE
ROSALIE
SQUAMOUS CELL CANCER OCT. 20002 NOT STAGED
THYROID CANCER STAGE 4 JANUARY 2003 | | |
#49701 01-02-2005 12:07 PM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | CORRECTION TONGUE CANCER SQUAMOUS CELL
ROSALIE | | |
#49702 01-02-2005 01:25 PM | Joined: Nov 2004 Posts: 15 Member | | Member
Joined: Nov 2004 Posts: 15 | VOICES OF COURAGE
ROSALIE
ORAL CANCER 2002 NOT STAGED
THYROID CANCER STAGED FOUR 2003 | | |
#49703 01-03-2005 04:54 PM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2005 Posts: 94 |
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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