| | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Just a reminder if you would like to join me and other members Of OCF, familes and caregivers -- We are walking in the NYU walk on April 16th. Just pm and let me know if you would like to join us!!
And please check our current events site to join an event near you, get a group together, walk to support OCF, walk to create awareness, walk to make a difference, WALK TO MAKE ORAL CANCER HISTORY!!!
Thank you!!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | 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 may attend the NY walk. I really detest NY but I will go if we can get together a nice sized team from OCF. I feel it is important to show up in a large group and walk together. Maybe we could get some tshirts made saying something about OCF on them. At Susan's walk last year Katie brought a large group. They had matching tshirts showing her father in law who sadly was lost to oral cancer. Her group was very visable. The tshirt idea with a nice sized group of say 20 - 30 people would make a great statement. So anyone in the area even considering attending, speak up and lets help Susan to get this group organized!
Eric and Elizabeth, any idea yet on if you will be making this trip?
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | I'm still trying to work that out guys...if I'm not dead from exhaustion by that time, I would love nothing more then to fly my family out to NY (wife's never been and it's one of her "dreams") have a great little family vaca and get to walk with everyone.
Still working on it...
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hope you can make it Eric, keep us posted!!!
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 |
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Eric
If you are going to be there, then I have to go. Okay, I am on a roll here. I picked the dates for our San antonio TX trip without realizing there would be an OCF walk during it, but now that I know, we will be there.
We will drive the four hours up to NYC to do the walk and we are so looking forward to meeting you and your wife. We've been to NYC many many times, even attending a swanky private ABA party at the top private floors of Windows on the World before 9/11 and my wife loves shopping in the garment district since she is a fabric artist showing her work at the Torpedo Factory Art Center here in Alexandria.
I'll register and we can share details later in PMs
Or maybe we can organize a little impromtu get together of you, Christine and some others while in NYC.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | Susan, team OCF for the NY walk is starting to come together!!!! Who else is going to come walk with us???? http://www.oralcancer-screening.org/events/index.php?com=detail&eID=74
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Oh Gosh, you guys are really tempting me now, I need to look into it again, I looked once then got busy with other stuff.
Charm-I'm going to PM you!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Charm, I love it. As soon as I have everything worked out I'll let you know but it does look very promising. I would love to get us all together and walk, team OCF!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Eric, I know you want to visit San Antonio too?!?!?! LOL
Christine, Charm and possibly Angelia will be there. Anyone else want to visit San Antonio? April 2nd, the first OC walk will be held!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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