| | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 58 | 1. google
2. Not much, but lately using the forum for venting and learning lots from all the fabulous OC survivors and caregivers who share.
3. No meet groups - hubs is adverse to "support" groups.
Bonnie
Bonnie
CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Just to add something to my original reply to this research, before I found OCF, and right after the H&N surgeon told us my son had "Squamous Cell Cancer", I went to some of the Med Info sites, but the info I read scared me so badly that I was afraid to even get online to find out more. It was not until about the 2nd week of my son's Rad Tx that I found OCF. When I went to OCF's site I found not only the best information available, but also the invaluable support and compassion to go along with the information. it is definitely the latter that made it possible for me to accept and digest the information I received and give my son the the support he needed. The two - info + support must go together IMO.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | OK, in regard to question #3, are there any members in NW Ohio, specifically Ottawa, Sandusky or Wood County who would be interested in a survivors' support group for oral cancer?
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | 1. General Internet Search after getting the first pathology report
2. The site was priceless more times than I can count. As I move away from it all, this Month being 1 year since I returned to work full time, it find that there is more and more time between visits. I do love to post my all clear results.
3. This was the only group I found. I think Oral Cancer is a very lonely place to be. Thank God I found it.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | 1. How - Google search.
2. I get the OCF news feed on my (Google) home page & only occasionally use the OCF main website, usually to answer a technical question.
3. Yes, this is a virtual support group & I have no in the real world support group.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | 1. I probably googled it, but don't remember exactly.
2. I only visit the forums here, a few times a month.
3. OCF forums has definitely been fantastic support. I don't have a "meat world" group (had to laugh.....did NOT get the reference). Now that I'm in the UK I have found an attempt at a similar e-vironment done my MacMillan Cancer Support, but I find it horrid and terribly depressing! I suspect that if I was still living in Vancouver I would be volunteering at the BC Cancer Agency, but somehow here it's just not on. When I was first researching oral SCC I found loads of out-of-date and terribly scary stuff on the internet, and nearly gave up, but finding OCF was fantastic and a fantastic stroke of luck for me. I suspect that since each of us has such a unique experience with OC, any "meat world" group would have to be pretty general and would amount mostly to moral support rather than practical support......but it seems if one could be matched with people in similar situations (as works at OCF) then face-to-face could be quite good? But I just don't see that happening.
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
| | | | | 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 day I was told I had Oral Cancer, I typed the words into the search and started searching. It wasn't long and I became the pain in the ass in the forums. I think it was within an hour and I started using this site and have loved every minute of it. The people here have given me much help and a lot of good advice. Geez, that seems so long ago.
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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | 1. google search
2. occasionaly,
3. this is it. OCF is my only support group.
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: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | 1. Internet search, probably Google, 4 months after last treatment
2. Multiple times a day initially, but now, 7 years later, infrequently. Many updates through Facebook page and RSS news feed.
3. No other support group
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
| | | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | 1. I know I was searching for everything I could find on oral cancer when I was diagnosed. Probably google.
2. Multiple times at first, and especially anytime I had another scare, which seemed to come often in the first 2-3 years. Now that I am 5years out - infrequent checks (maybe once a month) to see how folks are doing, etc.
3. No other support group... thought about joining one here in Atlanta, but never did.
I couldn't remember when I officially registered, so I had to look back at my posts - and I then remembered that I was a "lurker" on the site for @4 months before I finally got up the nerve to register and post something. Not sure why, except I had never been one to join internet forums at the time, but I would strongly urge anyone new who is also lurking to "just do it" and become a member of this community! It's a wealth of information and the forum is such a wonderful place to communicate all your fears, questions, and support to everyone else facing the same kinds of issues.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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