#87584 01-08-2009 10:02 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I saw this in the Wall Street Journal and I also see that it's already been posted in the News Section on this site. Man you guys are fast!
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 11 Member | | Member
Joined: Dec 2008 Posts: 11 | Hi David,
Yes we try to get the latest and greatest news articles on the site ASAP, the sooner the better. Glad you are liking the work we do and we will keep the articles coming fast!
Brittany | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Have to change that to You People are fast!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | That was on the national news about maybe 2 weeks ago, I think.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Welcome Brittany.
I check the news section about every 2 days and I know that Sheldon has been doing this up until now. Have you taken over for him? What else will you be doing in addition t keeping us updated on all the news that's fit to print?
David,
I've been telling my patients for quite some time that they will probably be seeing Gardasil available for males sometime in 2009. What bothers me is that there is still no mention of the protection it may provide from oral cancer, either in the current commercials or in the news releases. Must be that taboo topic, "ORAL SEX".
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: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Brittany is quickly becoming my right hand. Newsletter creation, helping Sheldon on the news section when his real world job ties him up, updating our donor list spreadsheet which had all of 2008 donors info on it (done), contacting the major cancer centers head and neck departments on the phone to see that they have our "how to find the support board" patient card available for patients, chewing away at a bunch of these every day, and not a negative reply to needing and wanting to have the cards sent to them yet, writing and send out thank you letters to donors, (promptly for a change), locating a new 4 color source or us to produce our OCF member stickers, ( at half the price we were paying for them before), and in the meantime digesting everything there is to know about oral cancer and the paradigm of it in the US. This is just in the first two weeks.... There was actually more, but it would have seemed to unbelievable to state it all. Add to this she has to put up with me each day......
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 | Putting up with you is probably the hardest part of the job. JK of course.
Brittany sounds like a great person for the job and what a job that is.
Congratulations to both of you for finding each other. We are lucky to have her.
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: Dec 2008 Posts: 11 Member | | Member
Joined: Dec 2008 Posts: 11 | Now now Brian didn't mention the real reason i come in to work everyday and thats to see Barkley his adorable dog!!!! No really I'm learning sooo much about oral cancer and everything that it involves, Brian is a great teacher and i can't wait for what is ahead!!!
BTW i'm starting writing the newsletter and i was wondering if anyone had any specifics on what they would like to read or learn more about? If so let me know asap!! Have a wonderful weekend!
Brittany | | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Alright, now that three of you have PM'ed me about "Barkley," my constant side kick and companion.... if you look at the past events page http://www.oralcancerfoundation.org/events/past_events.htmScroll down to the last picture of the Laclede- Biotene screening event, Barkley is sitting there patiently waiting while tons of people go through the screening process. Unlike me, he will hang out patiently, is polite and well mannered, does what he is told without complaint, and young women still find him attractive enough to approach him and start up a conversation about how handsome he is. He has all the best qualities of humans and none of the worst ones. His only drawback is he is way too smart for his own good. One day I hope to be as good a person as he thinks I am.
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: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Oh my, Barkley is adorable!!! Thanks for sharing the pics. I love the line "one day I hope to be as good a person as he thinks I am." If that were the case for everyone, the world would be a better place...I love how my dog greats me like I am the greatest person on earth...even if I just left and returned 2 minutes later with the mail in hand. :-)
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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