#72121 03-30-2008 04:13 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | A few weeks ago I got a surprised e mail from Ginny that used to post under MikeG. She was the CG for her husband Mike. He was one month behind me, just like Stoj. We traded some e mails and phone calls and to make a long story short, she and Mike and 2 traveling friends made their way to Gulfport and we had lunch at my wife's restaurant and it was just great to hug (not Mike now) and talk face to face. After 5 minutes I felt as if I had known them forever. They spent the day in beautiful Gulfport, took some pictures which she just sent me and I just wish I could spend some quality time with all of you that contribute to the value of this website.
That was cool.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I agree David...it would be wonderful to talk face to face with all of our CC buddies.
Glad to know you had a good meeting with Ginny and Mike...a little mini-affirmation of life.
Even better to have a good restaurant to go to...kudos to your wife.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | David,
I know that wonderful feeling as I hooked up with a member (Tizz)in Sydney, Australia a year ago Feb.
Last year at the NYC walk, I met Joanne and her husband Jack. The year before it was Sheldon and his wife. And this year, I will finally get some face to face time with Brian.
Every so often there is talk of having another OCF get together like the one in Las Vegas, which I think was in 2004 or maybe a year before that. It would be a great thing if it could happen again.
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Sounds like time for another OCF get together. We haven't had one since Las Vegas in 2004 that I know of.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 |
David:
How nice that you got to meet some OCF members in person. Oral cancer is best understood by someone who has gone thru it. I would one day love to meet some OCF members. Hopefully at next years walk.
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 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | I have always said I wouldlove to meet people ..and I would be more then Willing to arrange a GATHERING if you would call it .. I had said that before . I just need suggestions on locations and times of year and who may be interested in attending so when I am calling around trying to BOOK things I have a rough estimate !!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | We picked Vegas because of reasonable hotel rates, food, airfare and lots of things to do - gambling, shows, sightseeing, Hoover Dam, shooting machine guns, pistols, etc. The tricky part is finding a time of year when the conventions in Vegas are at a minimum.
Jetagehobo is the only member left still living who was on the original planning committee. Dinah was too ill to attend (and subsequently passed away) and Danny Boy passed away 2 years ago.
Honestly, it was a double edged sword. It was great puting names and family members faces to it but, on the darker other side, it made it a lot more up close and personal when they died. It had a pretty profound effect on Brian and I. I would probably attend, as, I am sure, would Brian, although not without some trepidation. There is a lot to be said about the anonymity of cyberspace.
Danny Boy had also painstakingly put a LOT of work into an album of both survivors (who couldn't be there) and deceased members. It has been "lost" and we would sure like it back. It was a very profund moment seeing all of the beautiful people who lost the battle with the disease. For me and many others, it was one of the most moving parts of being there.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | 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 | Travelled Asia and Europe but have never been to the United States or Canada.
Have always wanted to see Las Vegas and if I could fit it in with annual leave from work and family commitments (elderly parents) and of course finances permitting I would consider attending. Even though I do not post too often lately I have been checking in daily for the latest postings. Am of course in touch with AussieH, Tizz and 2 others in Australia but would love to meet some of the people that I feel I have gotten to know through the forum. Feel it would be beneficial to share some of our experiences personally.
Regards
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
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Well I am game to start checking it out and working on things .. I did a, small in comparission I am sure, Powerpoint presentation for an Oral cancer awareness booth that I did...with whomever gave me the info .. BUT I would gladly put together a BIGGER one with everyone .... What would you say we figure atleast a year away ....and any specific month or time of year ?
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Would this be a bring your whole family or just the patient and caregiver? Sounds really great and we would like to participate if it works out.
Thanks for offering to put it together. In my other life I was a pretty good event coordinator and trade show worker and power point person so if you need some help don't hesitate to ask.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
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