#86674 12-25-2008 08:02 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | We have redesigned our monthly newsletter. It will start being emailed out in January. It is free, and will come via email as a multipage PDF document. It will quickly take you to new stuff on the main site, have short articles, have links to the most important current research news stories, and contain interesting short factoids that will run the gamut of nutrition info to products that we have come across that may be helpful, and provide links to outside information sources as well. It's FREE but if you are not signed up on this page http://www.oralcancerfoundation.org/newsletter.htmyou won't get it. You can unsubscribe from it at any time. Your email information, just like on the board here, is private and protected.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I signed up so long ago that I did it again, just in case. Hope I did't cause a problem by doing it again.
Looking forward to the first one.
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: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OP OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | we had to go with a new system for verifying who signs up, that's why you get the email that you have to click and respond to. We also needed a mechanism for people to choose not to get things any more, so now there is an automated way of doing that. Bottom line, we went from a simplistic collection of email addresses, to a system of doing properly, with no bogus cyber people or dead end email addresses. If you are on the old list, you might not get the newsletter. We just found there were to many names on it that were not really people.....
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | What newsletter? Just kidding, I just signed up for it.
Last edited by Gary; 12-28-2008 10:39 PM.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Brian and Gary,
Has this happened to anyone else?
I have repeatedly tried to sign up for the newsletter using the link you provided. I fill out the information screen, hit the sign-up button, and am immediately returned to the blank sign-up screen. Any suggestions about what might be wrong? Thanks!
Hope you are having an enjoyable holiday season.
Catherine
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Catherine, That could be because your computer is not allowing some Cookies. If you have your security settings very tight or if you are using a progran something like ZoneAlarm, you need to either temporarily turn them off or program them to recognize the OCF as an OK web site.
Hope that helps.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Mark,
Thanks for the suggestions. I did everything you mentioned on two different computers (one with Vista and one with XP) both protected by McAfee, which I turned off. Still get the same results.
Is there any way an Administrator can sign me up and generate the confirmation email to my address? Please PM me if you like. I guess no one else has had this problem.
Thanks,
Catherine
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | 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 | Maybe they don't allow e mails in Va?
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: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Catherine, are you using Microsoft Windows Defender (their soft firewall product)?
Are you doing this from home or work?
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Mark,
MS Windows Defender is turned off since we use McAfee. I blame this problem on Bill Gates-he is an easy scapegoat. I am working from home.
And David, I also think Gates blocks some emails to the East Coast for reasons known only to him (West Coast jealosy, maybe?). Have you had any problems in Florida?
Any help you can come up with, Mark, would be appreciated. Maybe some jury-rig on your end?
Catherine
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
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