| | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | 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: 8 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: 8 | 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: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | 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: 2013-2025 (ORN of lower jaw)
| | | | | 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) | | 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) | | 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
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Jerry & Sally
My wife and I are looking forward to this walk and meeting you also. We leave tomorrow to drive up for a NYC Garment District shopping trip. Our hotel is in Jersey City so we can drive up early enough Saturday morning to be there. My energy is flagging a bit so this drive will be my "Last Hurrah" for a while until I get treatment and recover.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Susan 2992
We did think long and hard about your walk in Bethlehem PA also but hoped I would be in radiation & chemo treatment that week. No word yet, but still hope for chemo to start that Friday before your walk if I hear back next week on radiation. Unfortunately the usual cancer tumor fatigue is starting up with me, so two long round trip drives in a week is problematic. Plus I may lose patience and insist on seeing the radiologist in person next week.
With any luck, I'll still be around to do your walk next year.
Hope to see you at the Andover walk
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: 8 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: 8 | Anyone who is attending from the forum, I encourage you to wear your burgundy OCF tshirts. It would be great to have a whole table of burgundy tshirts! Having survivors and caregivers from the forum all wearing our 'colors' makes a big statement. For any of the newer members, it will make it easy to spot our OCF members. Looking forward to seeing everyone Saturday
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 | How I wish I could be there! But I will be at home wearing my Burgundy T-Shirt in honor of all of you and picturing a huge table of Beautiful Burgundy T's. Please take lots of pictures!
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 2007 Posts: 10,507 Likes: 8 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: 8 | Todays walk was a big success! Susan Lauria always does such a fantastic job with her event!!! The OCF members in attendance today besides myself and Susan Lauria were Sally, Melissa, Charm, Suemarie, Jerry, Ann, Katie, Bethany, Eva, and Dr Brook was the speaker.
THANK YOU Susan for everything you do!!!!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Yes, Susan's walk was fantastic. Nobody told me that Susan was could be mistaken for a cheerleader beauty queen but it's true!
(note to Susan's husband who is as big & strong as Susan is pretty: I'm happily married and just saying what's what, please don't hurt me)
Plus Susan's mother was so nice and talking to her was one of the race highlights for Bev and myself.
Everything was perfectly organized and the drive up to Perona farms was filled with beautiful scenery.
Charm
Last edited by Charm2017; 09-24-2012 05:15 PM. Reason: typos
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 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Charm, don't know what to say!!! Thank you for the compliment, not sure I agree but I will take it!! LOL It was so great to meet you and Beverly, you both are sooo wonderful and wish I had much more time to talk to you!! Thank you for coming all that way to attend, it truly was amazing of you!! I am so glad you had a good time, so many wonderful people there. My mother enjoyed meeting you so much!!
The area is beautiful, I do miss living there! Its a beautiful part of the state. I hope you can make it again next year!!!
Give my best to Beverly, she is just wonderful!!!
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) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Oh and Charm, I promise my husband wont' hurt you!!! haha!!!!
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!
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