| | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) |  Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Christine, Jerry, Margaret, and all, I'm so glad you all are doing this. I would be there too if I could, though even without this newest heart challenge it would have been difficult on such short notice. I can't even think of someone nearby with the equipment to record me. Best of luck to you all. I know I for one will be very proud to have you represent us. BTW, I'm not sitting idle. I'm working on ideas on how to get the Oral sex/ HPV/OC info out to the youth (hopefully without incurring the ire of those against ANY mention of sex education in schools). My husband and I work with a youth group - young men ages 12 to 21 - and we have a strong youth protection program. That's a place to start, I think, but nowhere near enough exposure. A frightening number of children of 11 and 12 years old are sexually active and thinking that oral sex is "safe", and these children's parents in most cases have absolutely no clue. The thought of children and youth becoming our newest rising number of OC victims is incomprehensible. Lani
Last edited by Lani G; 11-11-2008 08:45 AM. Reason: Added text
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I'm going to try to get some bit of video from my regular digital still camera. I have written my answers, so I don't have to spend a lot of time before the camera. Does anybody know if I can send this digital video file the same way I send digital photos, with the USB cable? (Is that the right name for that cable that fits all cameras?) 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!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Is anyone besides me going to Philly? My appointment is at 11:00. What is this list of questions? I have not be sent a list of questions. Is that the list that Don posted someplace? If not, could you please post them or email them to me [email protected]. Take care, Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 |
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!
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | [quote=August]I'm going to try to get some bit of video from my regular digital still camera. I have written my answers, so I don't have to spend a lot of time before the camera. Does anybody know if I can send this digital video file the same way I send digital photos, with the USB cable? (Is that the right name for that cable that fits all cameras?) XO [/quote]
Collen
It is possible to send video file the same way you send pictures, BUT, those files can and do get quite large for email. May want to ask Caroline how she prefers the stuff to be sent. The better option may be to burn to a CD or DVD and send it via regular old snail mail or FedEx.
Caroline, if you're still reading, help on this...
Kevin
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Is anyone in contact with Sharlene? Since they are accepting video's, I bet she would do this also. She is young with several kids and a very photogenic, dynamic person. She'd be terrific.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | There' another thread on this on the General Board http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=83622&page=all Here's what I received late yesterday: QUOTE Kathy Wickline Casting is seeking men and women (all ages) who currently have or have had head or neck cancer and are either currently on or have taken head or neck cancer medication or treatment. Head &Neck cancer is basically from the throat up, but excludes the Brain and the Esophagus. H&N cancer is most common on the Oral cavity (mouth and/or tongue), Examples: Nasopharyx, Larynx (voicebox), and the Oropharynx and Hypopharynx (Base of tongue, soft palate, tonsils,etc). We are looking for people who have compelling stories to share. Short private interviews will take place on November 13th in Philadelphia for consideration of a commercial project (and possible print/web.. to be determined). You do not have to be an actor or performer. This project will pay an excellent SAG rate (i.e the professional union rate - Screen Actors Guild) as well as usage fees and travel. If chosen, the shoot will take place on December 2nd. If you are unavailable for the interview but would like to be considered, please contact Kathy Wickline Casting. Kathy Wickline Casting Ask for Molly or Kathy at: 215-739-9952 or by email: [email protected] (see usage�next page) Usage: The ultimate goal is to create an awareness campaign that may include TV, print and web. I know there is talk of creating a DRTV (Direct Response TV) ad that features people sharing their personal stories and possibly concludes with a call to action graphic for viewers to call a 1-800 number and/or visit a website to get more information about H&NC. This ad may air nationally depending on the media buys it receives. As for the print usage, there may be a newspaper/magazine/web component too but at the very least posters and/or banners, featuring people and their stories, will most likely be created and displayed (internally). What will take place at the interview? Please share your personal story with us by spending a few minutes (as many as you feel comfortable with giving but no more than 10-15 minutes) on camera answering the following questions: Tell us a little about your experience with cancer -- * How and when were you diagnosed? * What was your reaction to being diagnosed? * What treatment are you currently receiving or have you received -- any medication(s)? If so, what kind? * Is there any history of cancer in your family? * What has the impact of having cancer been on your life, family? * What has been your greatest source of support during this experience? * Anything you would like to say to someone going through a similar situation as yours or perhaps being newly diagnosed with cancer? END QUOTE
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I am thinking of all of you!! Good luck, OCF people are the most caring and courageous, they got the best!!!
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi all,
In my humble opinion I think the audition went well. As I'm not quite sure where they are coming from or where they are going, I'm not sure if they will want to use my story as a Stage I with no chemo.
I did try to pry a little and was told that the commercial will not be selling anything and it's purpose is to raise awareness. I told them all of us at OCF will be grateful for that. I did get a plug in for Brian and the OCF, which I was happy that I was able to do.
I will be awiting an email of phone call and will post when I hear something.
Good luck to all of the others that went today and will be going tomorrow and/or sending in videos.
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"
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Glad to hear yours went well Jerry. I got the same impression, not quite sure what they were looking for. I hope mine was ok. The people there were very nice. To me, the director (I think thats who he was, the guy asking the questions) seemed very compassionate. I had a parking ticket waiting for me when I came out. Can you believe $115? Best part is that I had paid to get a parking stub and it was displayed. My stub was good from 1:45 til 2:45 and the ticket was written at 2:05 and said I didnt have the parking stub. I think the out of state license plates made my car a target. Im planning on fighting the ticket. I also got the OCF plug in. I got to meet Margaret today, so it was a good day 
ChristineSCC 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 | | |
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