| | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Colleen, Jerry,
What you said is perfect. Any way we can get a message out about oral cancer and early detection is a home run. It has to get in the mainstream media, it would be great if people from OCF were involved because of their experience with this disease, but if it is not to be , then any message needs to be aired.
This disease needs to be stopped, because I truly, truly do not want to see people suffer like my brother. Even though it has abeen 2 years since his death, It is like yesterday I was watching him trying to breathe, or just open his eyes. It is something that has changed my life forever, no one should have to live like that, it is not living, it is existing. It will haunt me forever that we did not know the signs of oral cancer and could have prevented the pain and suffering he endured.
And after reading all of the posts of all the people here, it sounds like alot of it could have been prevented it 1. the dentists knew what to look for and 2. What we should look for.
It infuriates me that money is always the reason for evrything, why can't people just go on and tell their story so a life can be saved? It seems so easy to me, I guess I am living in gullable land, but there has got to be someone out there who can help OCF do more PSA's, not for profit, but for saving lives.
Sorry for the rant, it is one of those days!
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Colleen, Jerry, Susan:
Very well said, and I ditto your sentiments.
Until we find the cure, public awareness is the key to early detection, and early detection increases the chance for survival and quality of life.
And whatever it takes to education the public is worth it.
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: 2013-2022 (ORN)
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I whole heartedly agree and when I responded to their offer basically said the same thing but in reader's digest version. They have the connections and even though they are not sure about canadian prodctions I am still sending story and if even the story can help...I too just want to be able help even one person...
On a selfish note it was good theropy for me to try to verbalize my story it was the first time I had talked about how I felt since I was diagnosed...wow such strong feeling and it helped to get them out so reguardless if they use it or not it did help one person ....ME!!!
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 | I still haven't heard anything, Maybe the mouse on here was hungry. I fed him coffee thru the key board not long ago and maybe should have given him food with it. I hope they inform me one day soon.
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 | It seems strange to me that some people didn't get the "Thank You" email.
My understnading is that the producers or Terry will contact those that they are interested in, early next week. With Thanksgiving on Thursday and the shoot planned for 12/2, they would certainly have to make a decision early in the week so people could plan for 12/2.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Bringing this to the top.
I would assume that no one has heard from the producers.
I would assume that we would have heard something from them by now as the taping is scheduled for 12/2 and it is now less than a week away.
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 | I haven't heard a word, but... the Screen Actor's Guild is about to vote on a strike and since this commercial was being shot under a SAG contract, there might be some hesitation about going forward on the part of the producers. But honestly, I have no idea 
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 | See my post today in the Activism "Commercial" thread.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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