#91628 03-11-2009 07:40 PM | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Dear OCF posters,
I just wanted to mention again that we have some walk events scheduled in various cities to help support OCF and awareness in the near future!
We need your help in getting the word out about these events.
March 14th - Nashville, TN
April 18th - NYC, Philadelphia,PA - Baltimore,MD - Cary, North Carolina
May 2 - Bethlehem, PA
Come out and support these walks if you can. It means so much to have oral cancer surviors and caregivers there. No one can spek to others with the voice you all have.
You can register on the current ocf events page of the website.
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: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Susan,
Having any in Northern California? San Francisco is a nice place to walk...
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hi Frank, As of now I am not aware of any in that part of CA. But if you are interested in starting one, I will help you all the way! If you know of anyone who would want to start one, give them my email address ( [email protected]) and I would be more than happy to speak with them! Thanks!
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: Dec 2008 Posts: 20 Member | | Member
Joined: Dec 2008 Posts: 20 | My husband and I attended the Boot Scootin' Walk in Nashville yesterday!( Sat.) What a thrill to be there! We had such a great time and good food, fellowship, and fun. What's the saying some of you have on your signature? .... Learning to dance in the rain... Well, it poured the whole time, but since cancer doesn't care if it rains or not, neither did we! We walked around Centennial Park and splashed in the puddles and then returned to the pavillion to the sound of the theme from "Rocky" being played by the DJ. Thanks to Nikki and all the people that put the event together. I'm already looking forward to next year.
59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 |
Nice to hear you went, Kathi. Hope you had the opportunity to meet other OCF members in person.
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 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Dear Kathi,
That is so wonderful to hear! I am so glad you attended. Nicki worked so hard on this walk and I am sure she will be glad to hear such good feedback!
Having OCF there I am sure made an impact on the walk, your support is so greatly appreciated.
Thanks for making it a success!
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Are the details for the walks on the general site?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | The walks are listed on the main pages of OCF. They are also on facebook.
Susan, are you having your walk in NJ again this year in the fall?
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you Christine, I did find them. I don't see a time for the Bethlehem walk. Did I miss something?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Suzanne, no you didnt miss anything. Hope to see you at the Bethlehem walk. I think its something like 9-1, not sure.
I was referring to Susan Lauria's walk in NJ. She had one that was very successful last fall. It was in honor of her brother David Nasto, who sadly did not survive oral cancer. I think she is doing it again this year, but not sure.
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 | | |
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