| | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi everyone.
Some of you don't know me, but many do. Due to personal (not medical) reasons, I have not been an active member of the OCF for about the last 12 months. I have gotten many PM's and hope that my responses have helped those that have contacted me. Despite my having retired from the practice of dentistry, I am always available to use my knowledge wherever and whenever I can.
This coming September 24th, I will be attending Susan Luria's walk, as I have done every year since she started honoring the memory of her brother David.
I would like to introduce you to a tradition that I started years ago when I attended my first walk. I asked members that could not attend the walk, to send me a picture of themselves so that I could carry them with me during the walk and in this way, they could be there, too. I still have all the pictures that were sent to me over the years and they will be with me again this year.
Whether you send me a picture or not, this would be a great time and opportunity to donate to the OCF. If you are interested in sending a check to sponsor me at the walk or to send me a picture (or both), send me a PM and I will let you know my address.
Let's help make this the best fund raising walk of the year.
Thanks.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Jerry,
I won't be able to make Susan's walk this year but I LOVE your idea of carrying pix for those who can't be there. GREAT IDEA!!! Look for my PM.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Good to hear from you Jerry!!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 LOVE your idea Jerry!!!! I remember that I had sent you my picture to carry as you walked one year before we met in person. I think you carried it in the NY walk. Its so nice that you walk for those who cant!!!
I also love your fund raising idea. Many people, even some of OCFs members do not understand that OCF is a non-profit organization that runs on a shoestring budget. It relies solely on donations which sadly do not always come in. I hope anyone who is able to donate will share what they can with OCF. What would we do without this wonderful site for OC info and support?
Another way people can help is when they purchase from Amazon to always go onto the Amazon website by way of the green box located on the forum pages. This will give OCF a tiny kickback. This is another great way our members can give back to OCF, every penny counts.
Im looking forward to seeing you next month Jerry!!!
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 | Jerry you are Da Man!
I've missed your posts brotha, glad to read this one and I love the idea! I would love to go to the walk, I've tried a few times this year to get to at least one to no avail. I need to get to the east coast to meet you guys in person!
Keep rockin the free world!
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Nice to hear from you guys.
Eric...make it soon. That would be great.
Christine...seeya in NJ.
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: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | hi jerry!
it most certainly is my time. i just tried to send you a PM, but you are "over your private message limit" please contact me when you get a chance.
and christine.. if u see this.. thanks for the amazon tip.
nancy
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Nancy.
I cleared out the messages and sent you my information. Thanks for your support. Don't forget the picture.
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: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 247 Likes: 1 | Jerry, This is an opportunity for me to publicly thank you for answering several PMs regarding potentially serious dental issues for my husband. Your help was very much appreciated and got me out of panic mode. I will be happy to sponsor you and support this great OCF with a donation. Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Jerry,
I would have loved to have been there myself but failing that would like to sponsor you for the walk.
I have just emailed you 2 photo's of me taken earlier this year. I chose them because it shows the moroon wrist band (which I never take off).
Pick the one you think is best.
Also need to purchase some more OCF cards so will do that as well.
I look forward to seeing the photos from the day and hope you have good weather for the walk.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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