#50423 10-25-2007 12:17 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 | http://www.cbsnews.com/stories/2007/10/25/earlyshow/health/main3408108.shtml#ccmm I have been working with Colleen Zinc Pinter, a long time daytime TV star on As the World Turns, since before she began treatment, and today we made our first step together with her on the CBS morning show talking about her oral cancer experience. This is soon to be followed by TV PSA's for OCF and much more. PLEASE ALL OF YOU GO TO THE BOTTOM OF THE LINKED PAGE AND THANK CBS FOR SEENG THAT THIS DISEASE GOT PRESS COVERAGE, AND BEING PART OF TELLING THE STORY THAT WILL HELP OTHERS KNOW AND AVOID BEING IN OUR SHOES. A positive comment about Colleen opening up about her own fight and personal life would be nice as well. If we show how important this story was by filling their comment block up, I am hoping we can get a more in depth story told in the near future about the disease.
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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#50424 10-25-2007 12:52 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Brian,
Consider it done. I think the TV spot will have a great postitive result.
Jerry
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"
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#50425 10-25-2007 01:32 PM | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2006 Posts: 166 | done deal!!! 
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#50426 10-25-2007 02:27 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 | Turns out that Hannah Storm also keeps a blog about this that you can comment on http://www.cbsnews.com/blogs/2007/10/25/hannahsblog/entry3409342.shtml#ccmm
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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#50427 10-25-2007 02:28 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 | Turns out that Hannah Storm also keeps a blog about this that you can comment on http://www.cbsnews.com/blogs/2007/10/25/hannahsblog/entry3409342.shtml#ccmm I think the first one is more important to post on, but for those with the energy hit this one also
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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#50428 10-25-2007 06:44 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Sorry brian i cant log in from the UK!!!! No Zip Code
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#50429 10-26-2007 02:31 AM | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | I added my $.02 worth to the site. Nice work!!
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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#50430 10-26-2007 05:29 AM | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 |
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | |
#50431 10-26-2007 01:08 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I posted to thank them for this story.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#50432 10-26-2007 02:30 PM | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2006 Posts: 166 | Liz use mine 30024.
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#50433 10-26-2007 02:44 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 |
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#50434 10-26-2007 05:07 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | thanks bill
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#50435 10-27-2007 03:52 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 | Thanks, the list there is growing!
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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#50436 12-10-2007 05:16 PM | 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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#50437 12-10-2007 07:03 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I saw an article in a magazine at the drug store today.....a soap opera mag., which I think was Soap Opera Digest. It had an article by an actress with oral cancer, titled, "The Cancer That Nobody Knows Anything About." I guess she thinks she discovered it....Anyway, I did not buy the mag., but I am going back tomorrow and will either lay out the $5 or take notes so that I can see if the article is on the internet. Does anybody have that mag? You could save me $5!
XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50438 12-10-2007 07:10 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 | Colleen did an interview for Soap Opera Digest which came out about 10 days ago, perhaps that is the issue that you saw. It's a pretty small format ( like Reader's Digest) magazine. OCF got nice mentions in the article. Her next interview is scheduled with TV Guide for about December 18th release. While she didn't discover it, she does understand that the vast majority of Americans have never even heard of it from her conversations with me. They wanted to get the public's attention, put it on their radar, and as we all know that is a core part of changing the incidence and death rate in the US
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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#50439 12-11-2007 02:34 AM | Joined: Mar 2004 Posts: 98 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 98 | This is copied from my link above..
According to the newest TV Guide, Barbara will end up getting the same cancer(oral cancer) that CZP had in real life, it was pretty much her idea to do the story, because she was going to bring it up to the producer of the show, but he pitched the idea to her before she even had the chance to do it.
It says that she will get the news on January 2, and pretty much she says that Barbara is all alone when she gets the news, she gets it after being banned from the baptism of her grandchild. She pretty much prays for help right after finding out, she said they were very hard scenes to tape.
There is no word on how the story will turn out at the end because of the writers strike.
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Last edited by ATWTFanForever : Yesterday at 06:39 PM. Reason: just wanted to add in the original post what cancer Colleen had.
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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#50440 12-11-2007 05:58 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 | This wasn't supposed to hit the news until after TV Guide published the interview on the 17th. Then OCF was going to do a PR story in the media about art imitating life and how many days the oral cancer story will get aired on national TV (millions of viewers per day) over several months, with yours truly as the the technical advisor to the show. It's a great story about how a producer, an actor, and a non-profit come together with an idea to inform the public about a disease, little heard of, through a story line in a daily drama that will last for more than a month and put lots of good information out there (unlike Grey's Anatomy, that got most of the disease issues wrong, had doctors who had never done a glossectomy doing her surgery, and treated the entire subject only as comic relief in the story line, as opposed to treating this killer with the seriousness they show other cancers). The person that put this out in their blog, spilled the beans too early and screwed up the timing of everything. But in this case art will imitate life with Colleen's character getting the disease she personally had herself. There is more than one way to spread the word....especially when you have no money.
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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#50441 12-12-2007 03:03 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I entered my comments about Colleen appearing on the Morning Show. A little late but it was accepted. Have great day all. Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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#50442 12-12-2007 03:04 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | that is a wonderful collaboration and a great way to spread the word. Sorry the news broke early and I hope thw writer's strike ends soon so it doesn't screw things up!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#50443 12-12-2007 05:07 AM | Joined: Mar 2004 Posts: 98 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 98 | Brian are you sure that the interview isnt already published in tv guide ? I do not have a copy here, but in the post I found which was at an a Another World message board the poster said it was in the current issue.
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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#50444 12-12-2007 05:15 AM | 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 | I was told the pub date was to be the 17th, but they may have put the story out early. If that is the case OCF can now do our own press release to get some attention for the disease in other venues.
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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#50445 12-12-2007 07:26 AM | Joined: Jun 2006 Posts: 22 Member | | Member
Joined: Jun 2006 Posts: 22 | I followed the link above and watched the TV interview with Colleen Zinc Pinter. I was pleased to see the clip from when she is back at work acting on As the World Turns - in the scene she is giving out to somebody and speaking quite fast with only a very slight slur. I am really proud of her - giving it socks and to hell with the impediment.
I have the same sort of slur sound when I try to speak fast (just imagine Colleen with a bit of an Irish accent). I hope I can regain my clarity of speech to the extent that Colleen has. I am inspired to try harder with the aul tongue exercises! And get a part on a soap opera! Wellllll maybe that would be stretching it.........
Redser
SCC of the left lateral border of the tongue.Partial glossectomy multiple nodes removed 01/06, T2/N0/M0.1 week Brachytherapy 04/06.Modified Neck dissection 1 node 06/06,negative. New ulcer 11/06,non cancerous, HBO treatment 01/07 to 03/07. 2007-2008 had speech therapy and voice training.OK now!
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#50446 12-12-2007 03:49 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I just watched Colleeen's interview. She is quite the lady and she got OC some publicity. I bow to her.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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#50447 12-14-2007 11:29 AM | Joined: Mar 2004 Posts: 98 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 98 | Brian i just wanted to let you know that the article in tv guide is out. The magazine is dated the 17th but must of got put out early.
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.
| | | | | Joined: Mar 2004 Posts: 98 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 98 | Yesterday at the end of the show, Colleen did a psa on Oral cancer and they gave an address to the OCF. I only hope that with the writers strike this storyline does not get lost.
Last edited by Karenmm; 01-17-2008 05:35 AM.
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.
| | | | | 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 | It will not get lost, it means to much to Colleen. As The World Turns donated that valuable (sellable) time to play the PSA for free, as well as the staff to film that one, and three others of different lengths. OCF will be distributing a 30 and 60 second version to stations across the US. This is expensive, but an important opportunity to reach the public with the early detection message.
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: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Are these viewable online ?
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 | Not yet, but when we get our final copies for distribution we will add them to our other PSA's we have done on the multimedia page of the main web site. If you haven't seen Blythe Danner''s, or Jack Klugman's, go there and have a look see.
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: Jan 2008 Posts: 82 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Yet another reason I wish I had found this site earlier, MUCH earlier. I think I will personally place pamphlets myself... I will make darn sure my ENT and PC know about this site by next visit.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
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