#83700 11-07-2008 03:14 PM | Joined: Nov 2008 Posts: 1 Member | | Member
Joined: Nov 2008 Posts: 1 | Hello: I work as a casting director in NYC and we are looking for survivors of Head and Neck Cancer for a commercial that will be shooting in New Jersey around December 2nd. The commercial will focus on people's stories and will show those who have prevailed. Brian Hill kindly granted me his permission to post here. The audition will be held in NYC on Wednesday, November 12th. The reimbursement fees are $574.00 for the day plus travel and expenses. There will be residuals as the commercial will be playing around the country. The commercial is for a really good cause, related to a particular chemotherapy. I cannot disclose the company or drug at this time. However I have discussed it with Mr. Hill, and he approves of my soliciting individuals here. He only other option will be to use professional actors, and he agrees with me that actual survivors will add a credibility to the effort not obtainable through any other method. If interested please contact me at [email protected]Thank you for letting me post. Caroline
Last edited by Brian Hill; 11-07-2008 05:24 PM.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | I think this would be a great opportunity to show the real "us," scars and all, even if it is for a commercial pharma company - it is a chance to again put a real face on 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.
| | | | | 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 got a call to come to the office. I asked just where is it located. Philadelphia is the location. I had to backoff for right now. I'm having too many problems at the present time.I really would like to do this for all of us.
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
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | I understand there are several casting people around the country looking for individuals. There may be more than one casting location.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Tempting with travel and expenses covered. Would be a little costly to cover mine 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | are survivors eligible if they did not use the chemo being portrayed?
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | 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 wish I could come and take part in this. I have 4 apointments this week and on Wed the 12th, I have an appt with my Oncologist and after him, with a surgeon about an enlarged prostate. Always something going on it seems. Monday is with VA and Tuesday is with eye Dr.
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
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I think you should take part in this too Jim after all the original glow in the dark human with a hairy tongue quite the story....
Seriously if survival is the game you are a pro!!!
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | It's about survivorship. That is the point, not a specific chemical even though the company makes several. If you don't call and ask questions, you won't know the details... I don't have them. The clock is ticking on the opportunity.
Last edited by Brian Hill; 11-08-2008 07:52 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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Ok I will try this again I have tried to post 3 times and my pc is acting up....
There are so many survivors with wonderful accounts of strength and courage. So much determination and caring. So many very talented medical teams. If this is just a commercial it is opeing a whole new world. I think it should also include the care givers and their journeys. But it is not up to me
In my city there is a local journalist who survived tonsil cancer and she has really educated a lot of people on oral cancer and this week is doing an hour long interview telling her fight. Detection and awareness of oral cancer is growing. Even my physiotherapist has never worked with someone who has had my surgery although she knows someone who has. People are becoming more and more aware of Oral Cancer. This is what is needed to save people from having to endure some of the treatments needed to survive.
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | You're preaching to the choir here...
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Oh well can't help it is in my nature... sorry I am just so glad there has been people here to help support and laugh with despite issues no one should have to endure...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I think the commercial is great!! I was just saying to Brian the other day that I wanted to see oral cancer commercials on tv. They have one for so many but not oral cancer. It would be so great if we can get oral cancer on the air waves. Since my walk, I have received so many inquiries about oral cancer awareness and that was just from a small walk! Imagine what we could accomplish on a national level!!
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | It would have been nice to have a little more notice. If the shoot is in Philadelphia, I may be able to do it depending on the time. Don't know if I qualify since I had NO chemo, but a two time cancer survivor with two neck dissections and trach might do. I will email her but someone is going to have to send me Sarah Palin's wardrobe. I live in dunagarees.
Take care,
Eileen
P.S. Anyone contact Jerry?
----------------------
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 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | I think my Mom would be a terrific candidate for this! Brian has all my contact info.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Ok, so I emailed Caroline indicating I prefer Philly and she told me the interviews in Philly are on Thursday the 13th and to call the Philadelphia number. I did and have an appt at 11:00 with the client. This is the website for the casting company if you need directions www.wicklinecasting.com. You MUST call for an appointment. Dress casual, but not dunagrees if possible. They do not have location for this shoot but will be in Philly area. I don't have the date for that. One other thing. They don't care what your treamtent was, they are looking for oral cancer survivors with interesting stories. 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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I just got this email from Caroline on the NY interview:
If you would like to come to NYC we will be holding audition this coming Wednesday, November 12th between 10-1 and 2-4 at Three Of Us 39 West 19th Street, 12th Floor between 5th and 6th Avenues. You are what we are looking for. There are other canditates but they are hoping to hire many people who have compelling stories (of which yours is definitely one).
Thank you,
Caroline Sinclair
Pick your poison guys, looks like they want several of us.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | They are looking for several people. And if they do not get the head count they need they will have to fill the void with actors. They don't want to do that but will if it's a must. I would love to go being 45 minutes outside of Philly or a little more then an hour away from Manhattan. I usually let any excuse happen for a Manhattan trip but I'm having a difficult time post-tx and I'm not physically capable of a trip at this time. Hpefully they get the people needed!
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Caroline e mailed me and said:
Hello David:
Thank you so much for responding. We are located in NYC but I am wondering if there is anyway that you could put yourself on tape (telling your story)? Webcam would work.
Tomorrow, I will forward your letter to my producer. They do have different casting directors working around the country so perhaps there is someone in Florida. Lets see what we can work out.
I will be in the office tomorrow and i am always reachable on my cell.
Thank you so much for responding.
Best wishes,
Caroline Sinclair
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | There is a concurrent thread about this commercial with a different casting company (Wickline) in PA -- The other thread contains more info on what they are looking for. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=83622&page=all
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Well, I emailed Caroline. I could make it down to NYC on short notice and this sounds like a really good thing. One question though, what, exactly, are dungarees? Is that another word for jeans?? (I'm a jeans and polo shirt kinda gal, after all!)
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Anyone that uses the term dungarees is dating themselves. I know this because that is what I grew up calling jeans. There was no such thing as jeans when I was a kid.
Any way, I have an appointment in NYC on Wednesday with Caroline and the producers. I spoke to her this morning. I have been away for a few days and didn't know about this until last night when I got an email about it. I didn't know that Philly was an option, but I happen to be off on Wednesday, so that works for me.
Should be an interesting experience.
BTW, I was told that there is no monetary compensation for going to the audition. Only for the taping of the commercial.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I received a call this morning while I was at the VA for bloodwork. I returned the call and was asked if I could make a VCR tape. They emailed me some questions that I have to have someone ask me and answer in my words while being taped. Now old windy will start to Sttasttastutter. LOL
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
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 72 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 72 | If you went to any Navy boot camp, you wore dungarees - even today. The jeans that are the work uniform of shipboard life.
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) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Happy to hear that dungarees still live!!!!
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I had emailed Caroline Sinclair also, and she called me today. There is no way I can get to NYC from Louisiana on Thursday, so she said what she had said to others.....that she would like me to write my story and the answers to the questions....and that if I could get some sort of video of myself, I should send it. We'll see if I can get that together. I want to be part of it, but it would have been great fun to go to NYC and finally get to meet some of you guys. Drat!
They won't have anybody on their commercial with a Southern accent, since they didn't give us time to get our sweet Southern selves up there.....
Have fun, everybody...you're helping to get the word out.
XO--Colleen
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Jerry, What time is your appointment? I'll be there at 2:30 wearing something other than jeans. 
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The one I am making a tape for is in Philadelphia. Pa. She's very nice and easy to talk to or with. And if the pants were blue and had rivets, they were Levy's. And yes I am dated but to complete the attire right, there had better be a pair of White AllStar tennys. LOL
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
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Margaret,
My appointment is around 11 AM. Christine B. has a 2:3o appointment, like you. Eva Grazel will be there at Noon. I doublt that I can hang around that long, but it's a possibility. If so, I'll look for you.
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | I am doing a web cam thing and sending it to her tonight. ;-)
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!!
| | | | | 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: 8 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: 8 | 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 | | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow I hope that I will be able to see both of you on whatever it is they are shooting...As soon as people know please let every one know when it will be aired...
I rather doubt that what I will be submitting will make it there in time...none the less am still going to make the dvd on the weekend.
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | I did a short webcam video (about 5 minutes) and zipped it up and emailed it. Can't do much longer, or email server will reject it. ;-)
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!!
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | That is great Jim I understand the email not taking a big file so you probably did the next best thing. I hope you got what you wanted to accross...I guess 5 minutes is longer than I would need very short story for me...Did you mark the file radioactive?
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote=JeffL]I did a short webcam video (about 5 minutes) and zipped it up and emailed it. Can't do much longer, or email server will reject it. ;-) [/quote]I did the same thing with a CD in snail-mail, but also made a very short video and emailed it. The software I used said that a video would take about 14 Meg for one minute and Yahoo rejects anything over 10 Meg.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I went to Philly today. Arrived at 10:30 and was out at 12:15. I was number 6 and there were 4 more behind me. None were from OCF. The one lady is the head the SPOHNC group that meets at Penn Tower. She and several others were from HUP and had my same surgeon. No one had heard of the OCF web site so I gave them the info. Dumb me forgot to take the OCF cards with me.
Interview was more of a monologue and lasted about 10-15 minutes. I have no clue as to how I did or what they are looking for other than what is posted on board but I did get my pitch in for OCF and Brian. Hopefully they will take some of us from the forum.
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: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
Hopefully they will use at least one person from OCF.
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 | | | | | Joined: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | Eileen,
I was also at Philly today - got there around 12:30 so I must have just missed you. I was given #12 when I got there, but when I went if for the audition, they switched me to #11. When I left there were about 5 people waiting.
My interview experience was the same as yours, and I also managed to pitch OCF.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Oh Phooey, I wish I'd known you were coming. I would have waited so I could meet you. Well maybe if we get picked, we can better coordinate at the shoot.
Did anyone get any idea by what date we will know if we are picked or not?
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: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | I asked, but they were kind of evasive � said a few weeks. But I was also told earlier that the shoot would be Dec 2 � which is just a few weeks away. They said we could call in a �few weeks� to find out. I�m sure if picked, they will contact us. It would be nice of some OCF folks are selected. It was another new experience for me.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
| | | | | 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 mailed a DVD today and then had to take the photo thy wanted and mail it seperatly . What a waste of a brain I have at times. I called and let them know it will be in the miail the 1st of the week. That is much more difficult than I thought it would be. It took 3 trys and I think Barb and I were both ready to call it quits when we had fin9shed the 3rd one. I hope we all impress them enough. Good luck all.
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
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I was told that the shoot would be in Plainsboro, NJ. December 2nd is also the date I was told.
Eileen,
You probably live the closest and I'm probably a close second. We'll have to discuss going together if we're both picked.
Susan,
I don't know where you live, but if it works out, the offer stands for you, too.
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: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | I believe that this could be very good for OC and this site and all the good it has done for many, many people.
If anyone can make the shoot and help tell the story it would be a monumental accomplishment.
Cheers,
Mike
Last edited by Dr. Mike; 11-14-2008 09:37 PM.
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sounds good to me Jerry but I doubt I'll get picked. Their jaw hit the table when they found out I didn't have a peg and only lost 4 lbs. I so so flabbergasted by their look, I forgot to tell them the rest of the awful stuff that I did have. We will see.
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 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Eileeen,
You never know who they are looking for. They were very secretive about it. I sure wish I knew what the whole thing is about. I guess we'll know when they're ready to tell us.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I figure being 72 and close to 73 might exclude me,, but I gave it my best. I just don't look near my age or even come close to acting it. LOL Heck, give me some good music and a loose partner and we shall dance the nite away.
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
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I love to dance :))but never have a partner:(( some people don't know how to have fun...I took my father in law out to a Abba tribute and had the time of my life had a hard time keeping up with him...You experienced guys know how to let loose...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I just received an email that they are not going to use me in the commercial. It was a very nice email from one of the interviewers.
I will be anxious to see who was picked and hope that some OCF members are selected for this project.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I also received an very nice email thanking me for my time. Except for this one statement:
Your story will be passed along to the producers and should they decide to pursue things further, we will be back in touch.
It sounds very much like they do not intend to use me either. We'll see.
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: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | [quote=Eileen]Your story will be passed along to the producers and should they decide to pursue things further, we will be back in touch. Eileen [/quote] That's Sho-biz
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I have the same statement, Eileen and so did Colleen in her email. Colleen pointed out that that one line could mean that this was a rejection.
Re-reading it and especially that one line, makes me think that perhaps there is still a chance, however, it could be a very diplomatic way of sending a rejection. My reasoning is why would they contact us at all right now. Why not wait until the final decisions have been made?
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I took it as a rejection also. I really don't expect to hear from them again. I don't really have time to take another half day off from work anyway.
It would have been nice if they had been more specific as to what they were looking for so people who didn't meet their profile didn't waste their time making videos and going to interviews. Will be interesting to see if any of us qualify.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I think we all got the same e mail.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I haven't heard a thing. Although my email has a way of 'disappearing' messages from time to time.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Maybe those that haven't heard yet, will get a different email saying that they were picked.
Or, maybe Terry hasn't gotten around to writing them all yet.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote=margaret_in_ma]I haven't heard a thing. Although my email has a way of 'disappearing' messages from time to time.[/quote]
If you have a SPAM Folder, check in there -- The EMail filter may have decided it was spam -- My Yahoo EMail does that often enough that I routinely check the folder.
They are likely culling the clips and sending notices to the not-chosen as they go -- If I were an actor, I'd like to know as soon as possible that I wasn't chosen so I could make decisions about other jobs.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I haven't heard either way yet, but expect the reject button to be pushed .
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
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I wrote and asked specifically for him to be more clear...that I appreciated the chance to participate, and that I am delighted that OC will finally get the attention that it deserves, but that if I am clearly not going to be part of the project, I will make plans to use the time for something else. I"ll report back if I hear. His letter was clearly basically the same for each of us, but was personalized also, and I appreciate that.
I hope that some from OCF are chosen, since this site is a very important factor in recovery for all of us!
XOX
Last edited by August; 11-18-2008 07:54 PM.
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Another one here with the same email language. Darn, and I thought my boyish charm and dashing looks would wow them . . .
;-)
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!!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | All is not over yet, until Colleen gets an answer to her email. It may still be that we all are still in the running.
Of course, if anyone receives a first email that says they're in, then that would pretty much clear up the confusion in the emails that we have received.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well , no reject slip yet for me. I bet they have a lot of tapes to look thru and maybe go over some 2 or 3 times. Myabe or maybe not . Whatever is fine because it was a hard difficult thing to put on tspe but also it was fun doing it.
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
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Well for me I guess the great white north was a little too far...I got my slip!!!:(( On the upside though my doctor's appointment on Monday pictures taken of my mouth and it will become a star. It is going to be the star of an international seminar given by my doctor and his collegues in Toronto, Ontario...
Weather in a commercial or just every day living each one of us in our own ways are stars. We are getting our stories out. I told my nurse that her directing me to this forum was the best thing she could have done for me. I told her of all the great people support and advice I get here...She said that's why the direction to the site.
Shine on everyone
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Dianne, you will always be a star and shine on my lil kingdom here. You put a smile on my face with every post you send. Have a great day there lady and misbehave a little today. (^^)
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
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I feel the same way -- I've done some public speaking before and still found it difficult to get a product that was even half-good -- I found it's actually easier with a live audience (likely the reason so many TV shows have a studio audience).
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Still no word about the commercial. Maybe next week.
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
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Okay, Has anyone heard anything, yay or nay?? The shoot is supposed to be on Tuesday. I figure they've decided to use actors after all. 
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Still no word here, I emailed them to question if maybe mine went into spam folder.. No answer at all yet.
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | WE have a lot of good actors in the forums I bet. Wonder just how many really feel as good as they say. LOL Including me. But being positive is the only way to face it and ignore. Pain is mentally right in front of the gun.
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
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I'm feeling pretty damn good these days, Jim! Still get tired pretty easily but I'm eating like a champ and the hole from my PEG tube is almost closed. Yeah, things are looking damned good. 
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Nothing yet, here.
They could have decided to delay the shooting or they are not using any OCF people.
I will send an email to Terry or Caroline next week.
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: 8 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: 8 |
No word here either. I never even got an email at all. Maybe they wanted our stories not us.
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 | | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Christine, I have had the exact thought.....that they will benefit from hearing our stories, and that they have found that working with professionals is a lot less trouble than letting us "real" people have our say. At least they have heard us and perhaps their final product will do some good in bringing greater awareness to some segment of the population. We don't even know what their purpose is/was in making this film. I do believe that they owe us some explanation or at least information about what they plan to do with the information that we provided. We shared openly with them with a certain expectation, and with not a little effort on the part of each person who participated.
Bravo for our OCF family to be so committed to helping others avoid this disease that we would come out in large numbers for this project. Whether or not it is ever completed is out of our control, but in some way we've helped. Maybe one of the interviewers learned something from one of us that will help him/her recognize a problem. That would be worth all the effort.
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Honestly, my story is not available for free to benefit a for-profit company. If they want to use it and hire and actor to say it, I would expect compensation for that as much as if they'd paid me to appear in an ad. I'll gladly share my experience here, where it will directly benefit other patients though!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | margaret,, I admire you for your courage and what you have accomplished ..I am so glad to hear things are looking good.
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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
Colleen, glad to hear I wasnt alone in my way of thinking. I like to know the 'why' behind things, and this didnt add up. I started thinking this way as soon as people started posting about the emails they got. I never got one at all.
Who knows what the real story here was. It would have been nice for some OCF people to be involved. At least we have Teresa and Jerry who have done a wonderful job on tv to spread the word.
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 | | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I didn't get an email either, but I went through Wickline Casting, not CaroCast, and their methods seem to be different.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Pete,
Did you go to Philly or did you send a video?
I'm curious as to what was different about their methods.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I am in Washington State, so I sent a poor-quality video on CD made with a web cam and a really bad microphone -- I also sent a very short one by EMail.
The difference is one has given no feedback and the other has given feedback that is ambiguous...
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I replied to their first e mail and I was contacted by phone and spoke to them for about 10 minutes. I was asked to come up like you guys did but I instead e mailed them a copy of the newspaper article that appeared about me several months post Tx. I then got the same confusing e mail that most of you got saying they hadn't made up their mind about me but thanks anyway.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | This afternoon I sent off an email to Terry, the casting director and to Caroline, the person setting up the auditions in New York.
When and if I get a response I will share it with everyone.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 |
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | 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 went thru wickline, they called to give me specifics of what they wanted , and did them on dvd. I haven't heard a word yet either and would appreciate them at least saying thanks, but no thanks. It seems they wanted us to go out of our way for them, but they are traveling a different highway.
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
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Remember, OCF members weren't the only people that auditioned for this thing so maybe they picked one of the others. When I left Philly around noon, there had already had 10 other survivors that had never even heard of OCF. I think Sue and I were the only two OCF members that auditioned in Philly. Most of us got a lovely rejection letter thanking us for our time. I don't think we should be hassling the agency for more info. They probably had no say in who got picked.
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 | We may be why they would rather deal with professional actors who expect rejection and for whom "No News is Bad News".
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I wanted to share with everyone the emails that I received from Terry in response to my questioning him about what was going on. I actually combined two separate emails:
[quote] Hello Jerry --
We hope to have our selections made by this Friday. If you are selected, Caroline Sinclair Casting will be back in touch with you to make the necessary arrangements and such. In the meantime, thank you for your continued interest in our project.
I forgot to mention previously that we are still moving forward with the production. The taping has been pushed back a couple of weeks though.
Terry[/quote]
I guess that there is still a chance that someone from the OCF may still be in the commercial. Since the taping was rescheduled once and the decision making was postponed also, they may just do it again.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | That's great to know, Jerry. Thanks for the update!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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