#95483 05-14-2009 06:24 PM | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Just added OCF as my friend on facebook.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hi Megan, Just received the brochures today for Ron's fundraiser. Thank you so much! If we help one person it will all be worth it. I noticed on your blog that you were reading other Oral Cancer blogs. I have one about Ron's journey, too. It is: http://www.ronswife.comThanks again, Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Megan, just joined this wonderful site. I think it's imperative that we get the word out there about the epidemic of oral cancer especially in nonsmokers and non drinkers who are probably HPV+. I think educating the public is essential but I think it's critical that the medical professionals be enlightened about this cancer and it;s symptoms. The survival statistics are abysmal because I believe there is a delay in timely diagnosis. My husband had symtoms of oral cancer for over a year(sore throat and ear pain) saw 2 different ENT's for several months and they failed to diagnose him. So, I think we need to get the word out there to the ENT's and dentists about this cancer. Tx nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Nancy, this has been going on. We take phamlets to Dentist offices, to waiting rooms in Hospitals, Dr offices and just about everywhere. No one has any grass growing under their shoes for sure. Good thinking tho.
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
| | | | | | MeganCannon Unregistered | | MeganCannon Unregistered
| For those of you who are unaware, OCF has a YouTube page with video messages from Blythe Danner, Jack Klugman, and just released yesterday- a message from me about the link between HPV and oral cancer. This is the first of three YouTube videos we will release by next year in which I will discuss the risk factors of oral cancer. Please take a look, make a comment, and spread the word! http://www.youtube.com/user/OralCancerFoundation | | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | It's a great video and I have it listed on my site already!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | 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 | Hummmm I wonder why Brian didn't want me to do this video? lol
Lets hope it gets tons of views.
Great job Megan
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Megan, this is great work for all 3 . Hopefully, hundreds of thousands will view it worldwide.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | The YouTube video is a great idea and you did a terrific job!! I'm glad to hear there are more planned. I will certainly use the videos to help spread the word!
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: 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 gotten responses from several of my friends and relatives. They are passing on the link to all their contacts.
Thanks for doing a great job.
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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