#74543 05-17-2008 08:29 PM | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Beginning June 26 a support group for OC will be meeting at Tulane University Hospital on the third Thursday of every month 11:30 - 12:30. I am part of the core planing group with members of the medical and support staff from the Tulane ENT clinic, Tulane Cancer Center.
As soon as I have more details about the 1st meeting, I will post here.
If anyone in the area is interested in participating, please let me know.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 | I hope you tell them of this web site. I'm sure you will. That sounds exciting. I wanted to do that at Moffitt but it's 40+ miles one way from my house so Moffitt gives my tele # to patients that want it. Not many have used it in the last year but the ones that do are grateful.
Good luck and keep us posted. Maybe it will inspire others to follow your "model".
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | David,
This Tulane project was inspired by your participation in the program at Moffitt. At my last appointment with ENT Feb. 28 I spoke with the Dr. about OCF and your "project." I offered to do something simular here, speak with patient and caregivers, work on raising awareness of OC,etc. He was very enthusiastic and told me that his primary reason for returning after Katrina was the great need for medical care here. He asked his nurse to setup a meeting with herself, me and the person who is the patient counselor at the Tulane Cancer Center.
The project is now going forward with geat interest from several of the medical staff and personnel from Tulane. We also want to involve other members of the area medical and dental community.
The support group is only one of the projects we are working on. Also on the agenda are quarterly physician education dinners, a screening event prossibly next spring during Oral Cancer Awareness month, and an annual Head and Neck Cancer survivors celebration.
It is my expectation that OCF will have an active part in of all these projects. (Perhaps you could come here to give your presentation as you incorporated advice from patients and caregivers from so many different types of Oral Cancer experiences.)
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 | Perhaps I should come there to get ideas from YOU. That sounds great. I wish Moffitt was closer, then again maybe I don't as my wife thinks I spend way to much time "dwelling on the past" as she puts it. I know she will never understand what this ordeal does to us, at least I pray like hell she won't, but I just feel like we survivors should do as much as we can to help the ones that will follow us.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Malka- You have to be one of the most inspiring people I've ever heard of. With all that you have going on you still want to put yourself out there to help others. I am truly in awe of you and hope to emulate your giving spirit.
Sue
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 | Malka,
You sure are a special person. You are an inspiration and I wish you great success in this important project that you have undertaken. If there is anything I can do to help, please don't hesitate to ask.
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Malka....you are quite a trooper! As I've written to you, I want to be involved, both in the OCF Louisiana Team, and the Tulane project. I live just 3 1/2 hours from N.O., and though I wasn't treated at Tulane, both my husband and I are Tulanians.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Colleen,
I am so impressed that you are willing to make the drive here. Thanks for helping with this.
I will be in touch soon. I am waiting for more info from Tulane.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Update - The support group at Tulane will be meeting on the 2nd Thursday of the month beginning August 14th.
Last edited by Malka; 06-04-2008 07:05 PM.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
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