| | Joined: Jun 2011 Posts: 46 "OCF across the pond" Contributing Member (25+ posts) |  "OCF across the pond" Contributing Member (25+ posts)
Joined: Jun 2011 Posts: 46 | 1.Google when searching for oral cancer
2.Daily at the moment - but I only was diagnosed on 13/6/2011.Expect this to change following surgery.However, I do anticipate frequent use post-op.I've found this site the most useful out there - mainly as it has a multitude of current, anecdotal, relevant contributors.
3.Yes & No
Last edited by Brendan Hanavan; 06-29-2011 03:19 AM.
50 yrs.Non smok.Mod drink.
Tongue canc SCC T2N0M0.
Surg. Jul '11 1/3 rd of tongue rem. & sel. neck diss.PEG fitted.
Aug '11 6 wks chemo/radio.3 more canc. nodes rem.
Feb '12 18 wks chemo.
Nov. '12 Mod rad neck diss on right, & pec flap rep. rem. of tumour under chin. More rad to follow in 2013.
**update** Passed away September 26, 2013
| | | | | 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 | Charm,
I don't get out much so any help is always appreciated!
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 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | 1. Google search
2. At first I got on everyday, multiple times per day but now I get on at least once a week to do a quick check up on my peeps!
3. Yes, Yes
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | 1. I can't remember exactly if it was google or what but some search engine. I was looking up Oral Cancer and bam there it was.
2. I check in everyday if I can. And use it for updating or venting when I need a kick in the ass from everybody on here to get me out of my funk or whatever mood I'm in. Will be on tomorrow updating on Ron's surgery...whoa boy long day ahead alone.
3. Yes and No (Ya the meat thing got me too but now I am edgamacated!) lol
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Brian, that's a good suggestion in re the cards. As I mentioned in my earlier post on this topic, this site was already well known to my RO and her staff. When I finished treatment I told her that I'd be willing to speak or meet with any of her new H&N patients. This was 2 years ago and I haven't had anyone take me up on it yet.
Oh and I don't have a meat group, I have a tofu group.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | 1. Google 2. Not as much as I used to. Usually once a week just to check-in 3. Yes, and yes (if you mean REAL WORLD)  . Hope this helps ! 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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | 1. I found OCF from a URL search - key words oral cancer.
2. I don't use the "information side" of OCF very often at all, but am in/around the forums at least every other day. I don't always post, but I do read.
3. There is a real world support group here in Winnipeg and I used to go to it when I was first diagnosed. Haven't been there in 3 years. I find the forums here more on point and have better information than the live support group which tends to so general and inclusive as to have become of little value.
Donna
Charm: That mind of yours is always working isn't it - makes me wonder what you are up to!
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Feb 2010 Posts: 79 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2010 Posts: 79 | 1. Google search towards the end of my treatment
2. Daily to check on the forum and occasionally for information
3. Yes and yes - occasionally attend a head and neck cancer support group.
Cathi
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends
*** 1-7-16 passed away unexpectedly ***
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | @ Donna: makes me wonder, too. I'm sure it will be insightful and interesting. I'm hoping my inquisitive child grows into that kind of mindset. And, it can't come too soon...he likes to take things apart to see how they work. He's getting much better about putting them back together, thankfully. @ David: Tofu? LOL!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Charm,
Glad to help out!
1. OCF forum postcard in one of my doctors� offices about 6 months after my first surgery.
2. It varies � it is my first place to research an OC issue. At least once a week.
3. Yes, OCF forum provides the best OC support group. Through OCF I meet other OC survivors in the area, and we keep in touch via e-mail, OCF forum, Facebook and in person.
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)
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