| | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hello OCF members: If you are in the New Jersey, Pennsylvania or New York area please come and support the annual David Nasto Memorial Walk for Oral Cancer Awareness. We have about 9 survivors attending so far, so if you can try to come and join the group! It means so much to have our survivors/and friends/family support these events. We have live music, raffles, breakfast, barbecue, 2 survivor speakers, free screenings. McDonalds is generously donating yogurt parfaits for those who have difficulty swallowing. If you are a suvivor who plans on attending, please pm me with a shirt size but you can still register on DD, all oral cancer survivors are free. Any questions, please let me know! http://www.oralcancer-screening.org/events/index.php?eID=2295Thank 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Well make that 10 survivors. I just registered myself and my wife for Susan's walk. Looking forward to see the OCF gang.
At first it looked like too long a drive from Virginia, but we are going to drive up to NYC to the garment district for my wife's birthday (she's a Fabric Artist at the Torpedo Factory here) and stay overnight at Fort Lee, NJ which looks like a straight shot out to Perona Farms.
Bonus: if you come to Susan's walk, you can find out Charm's secret identity as a mild mannered OC survivor instead of my Internet persona.
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 | Yippeee!!!! So glad you and Bev will make it!!!! Cant wait to see you again 
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 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Charm,
Since you are heading �up north� anyway why don�t you stay for a week, do some sightseeing and come to the Lehigh Valley Oral Cancer walk the following Saturday (9/29)! It�s in Bethlehem, PA about 1-1/2 hours away from the other Susan�s walk!
This is the 4th year we are holding Lehigh Valley walk and it is organized by local oral cancer survivors including three long time survivors (15+ years since diagnosis).
I�m hoping to be able to go to Susan�s walk also so I may finally get to meet you and your lovely wife!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I hate you all. I want to be there too...waaaah!! I know Charm's secret identity, but have never met him or his lovely wife. Wish I could be there. Have fun.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Aug 2010 Posts: 2 Member | | Member
Joined: Aug 2010 Posts: 2 | I am from India and I wish I were there........All the best for the every success of the Event......... My soul will be there on 22nd September...... One thing I would like to share with you the venue is Perona Farms....In Indian Language, "Perona" means Inspiration.....regards, LAL (Cancer Survivor) | | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I wish you could be there too Donna!!! I am using one of your quotes you said to me about Davids death being a call to action.
Thank you for your support, perhaps one day we can meet!
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | LAL,
Love that "Perona" means inspiration! David was surely an inspiration to me and to those who were lucky to know him.
Thank you so much!!
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 | Hey Charm,
Looking forward to meeting you.
Susan...can you list the names of all the survivors attending?
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: Aug 2011 Posts: 78 Likes: 1 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 Likes: 1 | My 3 year old & I look forward to seeing you on Saturday as well!!
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
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