| | 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 |
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: 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 | Right now its at 104 I will get my son to do a review today too. It doesnt have to be just the OCF members, others can also write one for OCF. TO ALL THE NEW OCF MEMBERS..........PLEASE!!! Take a minute and give OCF a quick review, every single one will make a difference!!!! http://greatnonprofits.org/reviews/profile2/the-oral-cancer-foundation1
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  | | | | | | MeganCannon Unregistered | | MeganCannon Unregistered
| 106! Thank you all soo much! Sometimes its a roll of the dice when you send out a mass email. We got a lot of returned emails from those who may no longer be with us and we even received a few who are not happy with the idea of us sending them a "mass" email. However, on the plus side we are able to reach out to those who do not log-in on a daily basis and are willing to help with a review. I hope that we can get 50 more reviews by Friday! Thank you all again for your help and cross your fingers!! | | | | | 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 | my son wrote one....now up to 108
cant make everybody happy....glad we got a big jump with the members who are only occassional users.
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: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | 108 We're doing it! Doesn't it feel great?!? But we need more, more, more! Go! Go! Go! Let's do it everybody! Let's show the world we care. Let's show Brian how much we appreciate him and his selfless devotion to the cause. OCF truly is his life. Honestly guys, for those of you who maybe really don't know, there would be no OCF without Brian. This is his baby all the way. I know he has some help now, and I am so glad that he does, but he is still the backbone of OCF and always will be. I don't know about you, but I would have been so lost without Brian and the OCF. It was hard enough going through what we did, but I can't begin to imagine how much harder it would have been without everyone here on the forums. Please - take a few minutes and write a review. The link is above in ChristineB's post. And I find it astonishing that anyone who has been helped by OCF would object to a "mass email" like the one I received. Simply amazing, but as they say, it takes all kinds. I just hope "those kind" stay away from me. Besides, don't they have a delete button? Did they have to actually complain?!?
Last edited by rosie; 07-29-2009 06:59 PM. Reason: fix typo
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 |
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Hey, guys, we're at 115! Way to go! My husband was able to post a review on our PC. (I did mine on my iMac and couldn't post a second one using it.) So if you want to have a family member do a review, they will probably have to use a different computer, and it also has to be a different email address. I also noticed that the award is for the most "positive" reviews. 3 of our competitor's reviewers only gave the Pediatric Cancer Research Foundation 4 stars instead of 5. I know it's only 3, but maybe that means we're 3 reviews closer to winning? Anyway, we are adding reviews at a good rate, but so are they,  , so we have to keep adding them. I'm sending an email to my daughter and asking her to write one and to ask her friends and co-workers to write one. All they have to say is that they know someone who was helped by OCF. As long as they mark it 5 stars and answer "yes" to the question about it being for the Cancer Fighters Award, the rest can be pretty brief. I know most of them won't, but even if I can generate a couple reviews and some of you can generate one or two, it will help. Hey, it's certainly worth a try! Keep it going!
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
| | | | | 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 | You all are unbelievable. I want to write something profound, that will truly express my feelings about what you are all doing, but to be honest I'm a little too emotional now to do it. You have all, in the last week, made the last ten years of my life more meaningful to me than you can imagine. What those of you who are here regularly to help others make possible is far beyond my personal efforts, and have taken this vehicle farther than my wildest dreams of what OCF could be. It also reinforces in me that there is so much more to do. With all of you behind the effort, there is nothing beyond our reach.
Just to give you some idea of the organization that is ahead of us, (they are certainly not by leaps and bounds considering this next statement)
2007 marks the 25th anniversary of the Pediatric Cancer Research Foundation, a year in which they passed the $22 million mark in funds raised to fight the war against children�s cancer. They probably spend more on office supplies than we take in all year.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Ahh, but all of that would not be happening if you had not created the framework AND in addition continue to set the tone for positive interactions (and keep the loonies at bay).
So there!
M
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: 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 | Mighty oaks from little acorns grow Brian .We will get there one day,and when we do it will be because we followed YOUR lead.
love and respect
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.
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