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#135896 06-28-2011 07:19 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Please help me out here. I'm working on a project/puzzle, one piece of which would be to know how posters found the OCF forum.
I'm primarily interested in three things:

1. The "HOW" : was it a Google search, a Bing search, a link from an article, a friend, happenstance, nurse's recommendation,

2. How often do you use the OCF main website and what for

3. Is this OCF forum a virtual support group for you and do you have a "meat world" group.

I'll start the ball rolling and hope to have an avalanche of replies here

1. Google result
2. Rarely, but more lately. Primarily to insert here in the forum as "authority" or an extended explanation to a poster.
3. YES, NO.

Now is the chance for all the posters who read rather than post to chime in with zero chance of hurting anyone's feelings accidentally, zero risk of being "corrected", zero possibility of suffering any of the slings and arrows of outrageous posters and a 100% chance of helping me
Keep the Faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2009
Posts: 701
Likes: 1
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Hi, Charm,

This is a good idea. I have often wondered how others found this site, too.

1. I came to this site late in the game after spending hours researching Clark's healing issues. Google.

2. Main website once or twice a month mostly for the news, or to confirm a statement I've read.

3. This is it, no other support group.

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Joined: Jul 2009
Posts: 1,406
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Posts: 1,406
1. I believe I used the Google. Although to be fair, this site was listed on a page in the original printed material my RO gave me and that I didn't follow up on at the time.

2. Rarely, and when so for research purposes.

3. Yes, Yes.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: May 2002
Posts: 2,152
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1. Oncolink - U of P's website
2. Rarely
3. Yes/No

Take care,
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: Aug 2005
Posts: 307
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Posts: 307
1. Google

2. Rarely

3. Yes,No


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
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Posts: 638
1. Through friend Gabe who recommended it and helped me sign up
2. weekly to check the news
3. don't know what "meat world" is so can't answer. However, suspect my answer is - this forum is my only means of support other than ranting to Gabe (?meat world)

I will also add that I use the forums to uncover needs I didn't know about so I can go into battle with doctors who have cut us loose and seem uninterested in managing ongoing issues and late toxic effects


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #135930 06-28-2011 01:49 PM
Joined: Sep 2006
Posts: 8,311
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1. Back in the day, Brian e mailed me from another cancer site and told me to check his site out.

2. Usually twice a day, sometimes more depending on a poster's needs. Try to help people and help Brian manage this site.

3. I didn't find this site until 3 weeks post Tx but at first I still found it plenty helpful and it was my only source of help.


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.
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1. I "think" I was just typing in Tonsil Cancer on Google and found the forum.
2. Just occasionally for research
3. This Forum is almost the FIRST thing I go to when I get on the computer each day. I have learned so much from others, and really glad I found it. I haven't a clue as to what a "meat world" group is, so No to that confused


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Joined: Sep 2006
Posts: 8,311
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Patient Advocate (old timer, 2000 posts)
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I think Charm meant MEET group.

BRH - I thin charm meant any human face to face group

Last edited by Brian Hill; 06-28-2011 08:16 PM. Reason: had a similar answer and too lazy to put up my own post

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: 875
"Above & Beyond" Member (500+ posts)
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Posts: 875
Duh, how funny. I thought, and thought about a "meat" group and came up with some dillies blush Being a retired technical writer, I should have figured it out myself, but thanks, David.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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