#77270 07-20-2008 11:11 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I was recently asked to join the free networking site facebook ( www.facebook.com) And I am starting to add friends to my profile and network there. I also started an OCF group on facebook. If you are not familiar with how web networking works, this is a viral way of getting connected with people around the country, spreading the word about your ideas, (oral cancer for instance) and in the case of OCF getting the foundation and its work noticed. I urge those of you that have time to, to take the 10-15 minutes it takes to set up a profile and start networking. You can all connect to me as your first connection. If you want to see what a profile looks like you ( without being a free member with a profile of your own can see a very abbreviated version of mine by just doing a search for me when you get on their site). Once you fill our your own profile you can see the whole enchilada. The web is becoming a viral way for ideas and connections to spread. Nothing wrong with working all the angles.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | I been on face book for a long time now.It is the most wonderful way of keeping in touch with family and friends,and the Mouth cancer foundation has a group network on there too.
i have joined the group this morning and added brian as a friend.
I found brian by searching oral cancer foundation,because there are an awful lot of brian hills on the site.
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Thanks to all of you that have signed on today. Seems we have a bunch of facebook people on the OCF site, and one who spent the 15 minutes to fill out their profile today. I am communicating with T. Boone Pickins as a result of my facebook profile. It is amazing who you can get connected to there. I hope that we can get a bunch of people on the OCF part of it that are not just patients, but dental students, doctors, and more that can help us network to get events and more done. This is a true grassroots mechanism to get things happening that goes beyond what those of us can do from the immediate OCF community.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Brian,
I basically signed on to Facebook last semester because it was required for one of my classes. I've never really spent a lot of time out there, but I will now. It's nice to be able to put faces with names and it makes the connections here a lot more personal. Thanks for creating the group on there!
Enjoy your week!
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
I am now a new member of Facebook. My full name is Christine Brader. I hope to now see who all my OCF friends are, putting a face with the names.
Thanks for all you do Brian.
Christine
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | I joined and invited my sisters and some friends as well to the group.
How about myspace next Brian!?
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I'm not a my space user. But I am open to anything that will virally spread OCF's message. You want to help us get started there?.... and this time I will follow your lead....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | my sisters and I would love to. It can reach more people than facebook! It can also help with the younger crowd. I'll talk to the girls tomorrow and we can design a layout for it.
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Amy:
Let me know if you are able to get something going on myspace, Im already registered there.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | 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 | Hi guys
I dont know about anyone else but it sure would be useful to me if you could put your screen names somewhere when you sign up for facebook.I am struggling knowing who i know and who i dont lol.Its wonderful to see faces at last to put with the names that have been part of my life for so long now.(margeret you are gorgeous!!!)so just to start the ball rolling,i am LIz Read.
Jim where are you? get signed up so we can all get a look!!!!
love liz
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I am here at least 2 times a day. I had a myspace and never used it so I think they made me history. LOL I can't even remember my user ID or Password .
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Well, I am procrastinating on fixing up and updating an online course I will be teaching in the fall and this gave me a wonderful excuse to do something I don't need to do nearly as urgently ;-)
I'm now on facebook (getting back to work)
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Sep 2007 Posts: 79 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 79 | Brian, you might want to consider a LinkedIn group. I think that LinkedIn is a more professional networking site than MySpace or Facebook (just my personal opinion). It's easy to set up a group there.
Jean
* 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.
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Agreed re LinkedIn, as well as Facebook and MySpace -- each hits different target age groups. LinkedIn is, as Jean notes, particularly good for professional networking.
-- Leslie
Last edited by Leslie B; 07-24-2008 05:19 PM.
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | I would like that too as I have had very, very bad experiences with the computer and Facebook attributed to a lot of it...I would much rather look at something more professional as I don't see myself doing the facebook...but will certainly go wherever I need to go to get the information that I need.
That's my personal opinion.
Thanks!
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I am a inked in member. If someone sets up the organization on there, I think we should all identify ourselves as OCF members so that people see what the common denominator is in all of us. You are right, my linked in profile has hooked me up to valuable business connections, and the other sites are social. I have NO social connections on my LInkedin page. There is a place for both, however if we do this on Linkedin, it has a different purpose. Obviously viral spread is still the solution to spreading the word.
I have never talked with anyone before that attributed computer problems to Facebook. I am curious what you feel they were.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Me too sinced I just signed up there and don't want to do anything that would cause that kind of problem!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Other than some simple JAVAscripts, there is nothing about Facebook that should cause computer problems. Now if your JAVA has not been updated in awhile, I supposed that could cause some "funny lookin" screens.
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | mine didn't cause me to have computer problems...it was my ex husband behind the scenes...facebook itself never did anything to my system. Just a nut of an ex-husband:-) And facebook may have improved a lot as this was about 5 years ago, I just have a bad taste in my mouth for it....my daughters use it all the time.
hope that clarifies for you.
Thanks!
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | That's good to hear. With millions of people on Facebook, and the rave reviews it has gotten on 60 minutes etc. I couldn't believe that it had some kind of issue when you viewed it on your computer.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Hi thanks for the hook up I am looking forward to being able to put faces to names too...I feel as if I know you all ready ...this is great I use face book every day helps pass the time...
Thanxs
Dianne
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: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | I'm late to this discussion but felt I should post this information as I just read it on a newslink I get from ZDnet: "My colleagues at Kaspersky Lab (see disclosure) have intercepted two new worms squirming through MySpace and Facebook, using social engineering lures to plant malware on Windows systems. The worms propagate via the comments features on the two popular social networks, using video lures and fake Flash Player downloads to trick end users into installing malicious executables." So, as with so many internet sites you need to be careful what you do. The full article can be found here: http://blogs.zdnet.com/security/?p=1615&tag=nl.e550
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!
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Anyone navigating the web with any regularity without spyware or virus defense that is current is at risk at many sites. Just having a PC instead of a MAC multiplies your risk by factors of hundreds. The web is not a safe place.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow that is so frustrating to have access to something as wonderful as the web for it to be so littered with viruses and harmful things. Without the Web I would never have found this site and all the help it has been to me.
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Well at least I can tell you that OCF's servers are protected from much of this, and scanned daily. The world (web or otherwise) is not a safe place, the trick is to understand that and protect yourself.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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