| | 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
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | I would love too!!...not sure how I'd work it out though! Next year?
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 | OK, I will hold you to it for next year! =)
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | So excited for Team OCF!!! Charm and Eric, I am going to pm you Kaitlin Caruso's email. She does a lot of pr work for OCF and she is getting backstories of walkers. She wants to send a release out to NY papers before the walk to get get some good press. Contact her and let her know you are walking. So looking forward to meeting everyone!! Christine, I will send Kaitlins email to you as well.
Looks like we are up to about 17 including some husbands and relatives. I would like to connect before the walk to get cell numbers so we can all meet up somewhere. I have not been to the NYU walk before so when we all get there we can find each other.
Jerry are you going??
Take care everyone!!
Susan
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: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | My mother and I will be walking. I am trying to convince my sister to walk also and her husband and son. I am so excited that I will get to meet you guys!! My sister and I also work at the same place and I believe some clients want to walk for her also.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2010 Posts: 201 | Also for those flying in. You can look at a hotel called on the avenue hotel. It's a smaller boutique hotel but is very nice and less expensive then the big names. I stayed there during my sisters surgery and some treatment and was very happy.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
| | | | | 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 think the chances are good that I will be going to the NY walk again this year. I've only missed it once, when I went to the Philly walk last year. It's such a shame that they're on the same day.
I'm heading out for a 2 week vacation in Florida and the Carribean this Thursday and will make it definite when I get back.
It will be great to walk with my old friends and meet so many new ones.
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Great Jerry, keep me posted!!
Have a wonderful trip! I can't wait to retire!!! LOL
Susan, so looking forward to meeting you!!
Susan
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Susan - How long are the walks, usually? I'm signed up for the Chattanooga April 23rd walk and my daughter also signed up plus another friend may be coming as well.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Ahh...backstories on the walkers...I'll start making something up, or better yet just use the opening monologue to the Jerk.
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 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 | Anne-Marie, I will help Susan out and give you some info. Thats great you will be going to the Chatanooga walk!!! All the walks are different in length. Here is a link that has contact info on it for any walk specific questions like the length. Im sure you will have a great time!!! http://www.oralcancer-screening.org/events/index.php?com=detail&eID=70
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Thanks, Christine - I do have that link but it doesn't give info on length of walks, altho' it does say more info coming so maybe I just need to wait for that. My daughter had the question on the length probably because we will make it a one day trip and the friend that is coming with us may need to work overnite and get back same day. They are both police lieutenants and also run 1/2 marathons several times a year. It's about time they do a walk for OCF! Jeanna Richelson is the Chattanooga coordinator but there is no email for her.
Eric - Now you have me very curious -What's this about a backstory? You can make something up if you like and I'm sure it will be entertaining!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hi Ann-Marie, sorry I missed this emal. AS Christine said, all walks are different. My walk is 4 miles and I believe Jeanna's is 2-3 miles. But I can check on that and let you know. Or if you want to email her, her email is [email protected]So glad you are attending her walk, it will be great! If you need anything else, please let me know! Susan
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Thanks so much, Susan. I will email Jeanna. I am really looking forward to the Walk in Chattanooga.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Sorry all.
After the last week or so this has become an impossibility for me. I doubt I could even complete the walk at this point physically anyway. It saddens me deeply as I was looking forward to meeting so many of my heros on these boards.
Next year or maybe another walk later this year may be possible.
Love you guys
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 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Don't worry about it Eric, there will be plenty of other walks!
We will miss you and I would have loved meeting you! Just take care of yourself!!
Take care
Susan
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Eric,
Hope you are doing better. Maybe next year. You will be missed.
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"
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