#83622 11-06-2008 01:49 PM | Joined: Nov 2008 Posts: 2 Member | OP  Member
Joined: Nov 2008 Posts: 2 | Hi - I saw this, don't know if anyone is interested. Seeking Men and Women (all ages and ethnicities) who currently have or have had head and neck cancer and are either currently on or have taken head and neck medication. We are looking for people (actors and real people) who have compelling stories to share. This is a SAG shoot (open to union and non-union alike) and will pay the SAG rate, plus usage fees and travel. There might also be a print component. The shoot date will be December 2nd. The interviews will be conducted on or around Thursday, November 13th. Please call 215-739-9952 or email [email protected] | | | | | 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 don't know what head and neck medicine is?
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 | I'd bet a dollar they mean chemo...
OK, I just called and the lady answering the phone said "Medications to shrink cancer" but didn't know anything more than that -- Sounds like chemo to me -- She will have the producer return my call and I will post more info as I get it.
I told her that most head-neck surgery is internal, but that a free-flap has visuals, like where Dr Haakenslash's Cut-Throat Team did just that, the tissue donor site, the skin donor site and finally, hair on the tongue.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | That would make a shot for ripley's believe it or not...your tongue with hair growing on it...
We're back to the hairy tongues again YIKES!!!
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | So, when your tongue starts balding with old age, are you going to buy it a toupee'? Sorry, this comment has nothing to do with the post above. I blame the chemo.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Like I said I think all the treatments we go through with head and neck intensifies our sense of humour and strenghtens our creativeness so I guess I agree...Either that or we just love to laugh
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 | Well, doesn't YOUR tongue have hair from your recycled forearm growing on it? If not, why not? I have considered using Nair on mine but decided it would likely taste worse than PEG-only food...
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 | Pete,
There ain't no hair on mine!! But I was told that if'n it had, the radiation would've burned it off anyway.
My flap was mostly taken from the inside of my wrist and there's no hair growing there... thank heavens!
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | No hair here either! But my arm had some crazy long black hair on it from the wound vac (I had Integra put over my wrist during the first surgery and they did my graft surgery at a later date).
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I was apparently the somewhat rare free-flapper who had already had radiation -- So I lost my beard but not my tongue hair -- I would have preferred the reverse, but there it is!
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 2008 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2008 Posts: 27 | Oh my word it never even occurred to me that you'd have hair on your tongue from the free flap surgery.
All of you are more and more amazing to me every day!!!!
Caregiver to husband, 44, nonsmoker, nondrinker
Diagnosed 7/15/08 with BOT SCC, stage IVa.
Two positive nodes removed
Cisplatin and erbitux ended 10/15/08
Radiation over 10/20/08
Back to work 11/24/08
PEG out 12/9/08
Scans 12/2008 and 3/2009 Clear
| | | | | 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 talked to a lady from the the casting office this morning when she called. She invited me to come to Philadelphia. I would love to go just to try and help us all. But Philadelphia , right now, is a long way for me to go. I have too many problems to get rid of before I travel.
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: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | I thought the same, and it might have even give me a chance to meet some of my new OCF friends, but I've got this heart/chest pain thing going on right now and can't even stand up for more than a couple of minutes without the pain putting me back down again. Well, maybe next time.
Lani
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: 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 |
Is this the same thing as the post from Caroline?
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 | It may or may not be the same commercial, but it is two different casting headhunters -- This office is in PA, the other one says it's in NYC -- If it is the same, they are only looking for chemo users...
BTW, I didn't get a call back or answer to my email to this one.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Jim you and your hairy tongue would be wonderful advocates...please reconsider lol
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: 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 from the otehr string indicating I prefer Philly and she told me the interviews in Philly are on Thursday the 13th and to call the Philadelphia number 215-739-9952. 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 and appranently want several of us. Take care, Eileen P.S. I posted the info the NYC interviews on Commercial of Hope string in the Introduce yourself Section of the board.
----------------------
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 | Here's what Kathy from Wickline Casting wrote to me in EMail -- I don't have a video camera.
Pete
QUOTE
HI Pete,
Thank you for contacting our office last week. We were surprised that the posting was seen by you (in Seattle!). We are casting here in the Philadelphia region and so far only have 4 people coming in on Thursday for this. I got a go ahead from the producer to ask if you would be able to put yourself on video and mail it to us. You will be considered for this commercial and if you get it they would fly you in. It will pay very well (it is for a major pharmaceutical company). Below you will find info on what they are looking for. Please send along a photograph of yourself as well. If you have any questions please call Kathy or Molly at 215-739-9952.
Mail to:
Kathy Wickline Casting
1080 N. Delaware Avenue - 7th Floor
Phila. PA 19125
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?
Thank you Pete,
Kathy Wickline
* 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: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | they are surprised you heard about it in Seattle when they asked permission to post it to a site that is seen worldwide??? must be a case of left hand not knowing what right hand is doing, I guess.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Rita, Not everyone wholly understands the words World Wide Web
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Well you want to talk surprised I wrote them just to say thank you for their efforts to raise the awareness of oral cancer and if they are ever thinking of doing something in Canada to let me know. They responded by sending me the questions and asking if I could send an interview via web cam or video to them...wow gonna try but don't have a clue where to start. That's where my friend comes in handy she knows more about that stuff...I am technologically impaired...
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 | There are two, and possibly three or more, casting companies participating in this commercial, so it's easy for the fingers and hands not to be communicating. If you use video and answer the questions, it will have to be put on disk or tape and mailed because the file will likely be too big to email (10Meg file for Yahoo; video runs about 14Meg/minute...). Here's what I got from Kathy Wickline Casting: 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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Thanks Pete I have been talking to a caroline sinclair so I have no idea how to do web and save it to disc unless well I will have to figure it out if I can't oh well...I am technologically impaired...
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 chose to go to NYC because I'm off today and will be working tomorrow. I will be meeting with Caroline and I think she said the producers, around 11 AM this morning.
I'll probably post in the other thread under "Activism" by tonight, as to how things went. It seems that the odds of anyone of us getting picked are somewhat slim as the interviews are taking place in several cities and will probably attract quite a few surviviors. I hope at least one OCF member gets in so we can maybe get in a plug for how much the OCF has and continues to do for 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: Jan 2006 Posts: 757 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 1 | I spoke the Philadelphia casting office, and was told they are only auditioning there and NYC, but also accepting videos. The commercial will be filmed Dec. 2 in the NJ/Philadelphia area. They termed the project a "Call to Action/Awareness" campaign, and will probably be TV, print, and web formats. They are looking for several people to tell their stories.
Good luck to all! It sounds like a great way to bring better awareness and understanding of this disease to the public.
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: Nov 2008 Posts: 2 Member | | OP Member
Joined: Nov 2008 Posts: 2 | Hi -
I'm from the Philadelphia Casting Office, (Kathy Wickline Casting) If anyone is interested in coming in tomorrow - we have some time still available from 11:00am - 2pm. Please call and let us know! 215-739-9952.
Our client is telling us that their ultimate goal is to create an awareness campaign that may include TV, Print & Web. Everything would include a personal story and then a 800 number asking people to visit a website or call to get more information about Head and Neck Cancer.
Our Office is 1080 North Delaware Ave, Philadelphia, PA 19125. All taped submissions may be mailed here, and the interviews will take place here tomorrow.
We are looking for ALL AGES, all types of head, neck and oral cancer, even if your cancer didn't originate in those areas but later spread there.
Thank you All who are coming in or sending in a DVD! | | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | If they are going to refer someone to a website for more information, I would be curious what web site that might be. Are they going to reinvent the wheel, or refer to their previous partner in things like this, or perhaps refer people to OCF?
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: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | If they are going to refer someone to a website for more information, I would be curious what web site that might be. Are they going to reinvent the wheel, or refer to their previous partner in things like this, or perhaps refer people to OCF?
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 am ready to attempt the video and I do believe Kathy wants a snapshot too. THey are very nice people and easy to talk to.
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 | 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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I wrote the answers to the questions and emailed them, and then I worked hard today making a short video with my digital still camera...was by myself, so it was tricky.....finally got it done...sent it by email....DING! returned...too big (just three minutes, but still too large for downloading at the other end. )I made a shorter one.....it came back from one recipient and didn't return from the other, so I sent some photos I took as my test pics today....and even they came back from Caroline. Oh, well....I guess I wasn't destined for stardom anyway. I wanted to get to NYC to be part of the project, but also to meet some of you guys. Everybody make a pact to keep the rest of us posted!
Good Luck! 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 | I'll bet whatever website it is, its something from the drug company that is sponsoring the ads. I know Erbitux's manufacturer has a big website presence and I'd imagine there are others out there, too.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Colleen, I'll let everyone know as soon as I know! 
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 mailed my DVD that Barb and I made today after 3 attemts. It's harder than we think LOL Forgot to enclose the photo so I had to mail it seperatly.
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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