#78517 08-10-2008 09:15 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Since the updates to OCF I have been a little lost. [considering my UN-geekness, that is not surprising] but here are my questions:
#1. I used to just type in JAM and immediately be logged in - can't do that now.
#2. I have been logged in for over an hr and 1\2 tonite and don't show up as who's on line- registered- how come?
#3. What does the commentary about Facebook mean?
#4. Am I too old for this ??? Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Amy, 1) your browser might have filled in the password. (not sure about this) 2) same here it takes some time to show up. 3) http://www.facebook.com/it is a social networking tool (OCF is on it). You get to see pics of the people you email... 4) Hell no! cheers Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Don't worry, Amy, I'm not on Facebook yet, either.
Once I get a chance to get back into that thread and decide where everyone wants us to be, I'll set up a profile. I'm not into this stuff, but both my children told me that they are "friends" with Brian. So I guess I should be, too.
To those who know:
Has it been decided that Facebook or that business web site (Link.. something or other) is the better of the two for our purposes?
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: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Hi Jerry,
Don't know whether Facebook or LinkedIn is better for the OCF but you gotta like being visible on both networks, so I joined both. Now if I could only remember all the passwords, lol.
Susan
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Just adding my two cents worth...(inflation hmmm) I have found some new friends added to my face book and have been able to see their families and friends and that just makes it that much more personal.
I think the two sites complement each other.
Again just my two cents ...
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Jerry i saw your son had joined face book,and i think thats brilliant.I keep in touch with all my friends and family through face book and have done for ages,its such an easy way of contacting everyone at once,and sharing photographs.My brother in laws step daughter formed a group on facebook to appeal for any news on Pauls disappearance.Within 24 hours it had attracted 800 hits from people all over the uk who are keeping an eye out for him.In total 1021 people have signed up for the group.it has really given me a boost putting faces to my ocf family names.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 asked my daughter about Linkedin (thanks for the spelling, Susan)and she belongs to both and I think she said there are no pictures on Linkedin. If part of what is wanted is sharing faces, then maybe Facebook is better. My understanding is that Linkedin is for business people. Hope I'm not repeating what has already been discussed. Brian, what is your opinion on what we should do? Liz, My son had his first contact with Brian after he arranged for his company (Bed, Bath & Beyond) to make a donation to OCF and Brian was nice enough to call him, to thank him. 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 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Hi Amy Glad to see ya back! My answers would be the same as Markus, especially #4  BTW - I rarely show up as "who's online" 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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | They go after two different audiences: LinkedIn is particularly useful for professional (work-related) connections. From its "about us" page: [quote]When you join, you create a profile that summarizes your professional accomplishments. Your profile helps you find and be found by former colleagues, clients, and partners. You can add more connections by inviting trusted contacts to join LinkedIn and connect to you. Your network consists of your connections, your connections� connections, and the people they know, linking you to thousands of qualified professionals. Through your network you can: - Find potential clients, service providers, subject experts, and partners who come recommended
- Be found for business opportunities
- Search for great jobs
- Discover inside connections that can help you land jobs and close deals
- Post and distribute job listings
- Find high-quality passive candidates
- Get introduced to other professionals through the people you know
[/quote] Facebook is more informal -- it was founded as an online version of the book that many colleges provide with pictures of incoming freshmen, and for several years only college students were allowed to join (you had to have a .edu e-mail address to register, if I recall correctly). Now it's open to anyone. Members -- particularly younger ones -- often share a lot of personal information, along with photographs (some of which could be embarrassing if seen by potential employers or parents!). You can set varying levels of privacy -- from letting anyone with a Facebook account see your profile to allowing anyone in your "networks" (school, employer, city of residence, etc.) to check you out to permitting only people you have specifically "friended" to do so. My daughter, who graduated from college in 2007 and is now working in New York, would certainly OK a LinkedIn connection with me, but I doubt she would approve a Facebook "friend" request from me! (Would you have wanted your parents to know everything you did when you were 23?) -- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Sep 2007 Posts: 79 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 79 | Hi all,
You can add a photo to your LinkedIn profile if you would like to do so. LinkedIn allows only one photo. FaceBook, for those who are members, allows many photos.
As stated a few times, FaceBook is a social site and LinkedIn is a professional site. You can join one or both. I use my LinkedIn profile as a business profile and am hoping to attract business associates who don't know about my brother's cancer. I don't have a FaceBook profile mainly because it seems like a site that will come and go with fads. Remember MySpace.com? I think that a lot of kids and young adults moved away from MySpace to FaceBook. I think that LinkedIn is more of a permanent networking site.
Just my two cents!
Jean
PS - Not many people from the OCF family have joined the LinkedIn group. There are more of my personal friends and associates than my OCF friends!
* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
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