| | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Just a reminder to anyone that the 2nd David Nasto Memorial Walk for Oral Cancer Awareness is being held on Saturday, September 26th at Perona Farms, Andover, NJ. So if you are in the area, come out and support OCF and have fun at the same time! Live Band, hamburgers/hotdogs/water ice, raffles!! And Jerry Wilck!! For more info send me a pm or go to current ocf events!!
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: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | For those in the NJ-PA area, please support OCF by participating in the David Nasto Memorial Walk tomorrow! I'll be there as well as a number of other OCF members.
Registration begins at 9:00 AM, and walk begins at 11:00 AM.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi all,
Glad to see this thread. I am so sorry to say this but I am not going to be able to come. I haven't been feeling well all day and I'm just not up to the ride tomorrow. I will miss everyone.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I was so looking forward to meeting you.
Hope you feel better real soon.
Jerry
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 |
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Susan and her volunteers did a fantastic job with the annnual David Nasto Memorial Walk today, especially by arranging for perfect fall weather.
The turn out was great, 3 local dentist were doing oral cancer screenings and I was honored to have been asked to speak at the event. Susan's husband, Harry slaved over the barbeque to provide everyone with more delicious food than anyone could eat.
I don't know if I have ever walked 4 miles at the brisk pace that was set today, but my feet are just about feeling normal now and the hour nap at my daughter's house sure was needed.
Jerry
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | So sorry to have missed this one. I've been looking forward to it since I was at the Bethlehem Walk. The weather was gorgeous...I was thinking of you all. Some of you I have met but I was looking forward to meeting Jerry and Suemarie for the first time.
Susan Lauria and I have discussed doing some screenings in Jersey (we live about 15 minutes from each other) So hopefully some people in the area can help us!!
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: 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 did my "Walk in Place Walkathon" and walked the 3.5 miles on the old highway at Lake of the Woods, near Kenora Ontario. Unfortunately, my educational material didn't arrive in time for the walkathon, so I will include with my thank you notes to all who supported me.
I too had a glorious fall day, but I walked the 3.5 miles the walkathon required and not the 4 miles you stated Jerry! Our naps however were probably of similar length.
I am waiting to hear from Susan as to the results of the Walk-a-thon, and congratulate her on her dedication to the cause that took her brothers life soooooo prematurely. It truly is an honour to him.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Susan really is awesome. She has a lot of energy and passion. She is also an excellent speaker. When I did the screening at my office Susan was there and everyone listed to every word she said.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I would like to congratulate and express my admiration for anyone that organizes and runs a fund raising event for the OCF. These types of events are vital for the continuing existence of this fantastic organization and web site.
I can't even begin to grasp the enormity of the positive effect that the OCF has had on the lives of those that come here for help. And, I can't imagine what the oral cancer world would be like without the OCF.
Thank you Susan and Donna for the most recent fund raisers that you have run.
Jerry
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 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | I might have missed a post or two, Donna, what is walk in place walkathon? Congrats to both Donna and Susan on doing such awesome work!
Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I am sorry it took me so long to update you on the walk! By the time we cleaned up and packed the car and rode our 2 hour ride home, and my sister, her husband and new baby stayed the night, I was exhausted!!! They just left for their ride home to texas!! Firt I want to say thank you soooo much to Donna for walking in place in her hometown in Canada! What an effort and I am so touched by her thoughtfulness! When I told people what she was doing, they were in awe! Thank you again Donna and I am so sorry you did not receive your materials, Megan does not know what happened, we did have the correct address! She is mailing them out to you again! I am very happy with the turnout again, the day was beautiful! NIce fall weather, compared to last years cloudy and rain! So I am thankful for that! The early count for donations is close to what we raised last year, $10,000 with more coming in. So I will have a grand total by the end of the week. In this economy, I am thrilled with the amount. We might reach over $11,000. So thank you to all who donated, I am very touched. As Jerry stated, we had lots of food! Hamburgers, hotdogs, bagels, Starbucks coffee, danish, Dunkin Donuts, apples, Ritas water Ice (which I forgot to put out until late!!) My husband manned the grill, which he loves to do, I guess like all men! He was just great, without him I could not have done this walk. Jerry was just great as well! Everyone commented on his speech and now are more informed than ever! Thank you so much Jerry and so sorry your feet hurt!! It was wonderful meeting you wife and daughter in law, very sweet people! We did have raffles and a live band, who were just fantastic and have already committed to coming back next year as well. They sold their cd's with all sales going to OCF, another $200! Wry Toast Band, look them up online, www.brianmcardle.net and listen or purchase their cd, wonderful southern rock music. It was great to see Sue Marie as well, thank you so much for coming and bringing your wonderful friend!! Overall, it was a great day and am already thinking about next year on how to make it bigger and better. My brother was remembered and I hope I made him proud, the OCF was brought to peoples attention and the wonderful work they do. So how cannot it not be a good day. Thank you to all for all of your support and encouragement. Now its back to work and we have some other walks coming up in Boston and Phoenix!! 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!
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