#50350 08-30-2007 01:06 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Keri -I was also a little confused as to whether I was what you were looking for. I am a caregiver to my son who also did not fit the profile. I would be glad to help if needed. Please just email anytime.
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.)
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#50351 09-04-2007 10:28 AM | Joined: Jul 2007 Posts: 6 Member | | OP Member
Joined: Jul 2007 Posts: 6 | Hi all,
Oops, sorry for all this confusion I have caused.
When I first started this thread, I was interested in talking with women because Brian and I were working on a pitch to a television show about women who have oral cancer but had none of the usual risk factors.
Now, that pitch is done but I am still interested in hearing from people who have battled oral cancer or have cared for those with oral cancer. But it doesn't just have to be women, or people without the typical risk factors. It just has to be anyone who would be interested/comfortable sharing their story.
I should also note that I work full time apart from the work I do for OCF, so some weeks I am not fast on the draw. So, if you don't hear from me quickly, just bear that in mind.
Thanks--and I do appreciate you all helping me learn the ropes around here. | | |
#50352 09-04-2007 02:58 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Keri,
You can contact me when it's convenient for you. You have my story, so whenever you have the time, I'll make time for you.
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"
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#50353 09-04-2007 03:36 PM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2005 Posts: 158 | Keri, part one of my story can be found here: http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/14/t/000018.html and part two in in progress. If I can be of assistance, I stand at the ready. Bill
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#50354 09-04-2007 04:07 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Keri, you have my permission to use any part of my Caretaker Blog that might be useful. Jam [Amy in the Ozarks]
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#50355 09-04-2007 04:25 PM | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Keri -- You can contact me at any time -- be happy to share my experience.
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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#50356 09-05-2007 10:46 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Keri, you can also contact me if you would want to hear my story, I was diagnosed with tongue cancer at age 44...Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#50357 09-05-2007 02:30 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Keri, I am 1 month past surgery. I had my surgery at Ohio State University James Cancer Center. I had a triple endoscopy, partial glossectomy andleft selection neck dissection. Dr removed 8 nodes. I have just ok'ed joining a study at Ohio State that will last up to 5 yrs to try something that I take 4 times a day for who knows how long. I will be seen by the person in charge when I go for regular Dr visits. My next appt is Oct 15th. I would be more than glad to assist you in any way I can. The cancer is gone for now and the study is for the often reoccurence of OC and see if this might cure a lot of 2nd time around. I am clear now but also have barretts esophagus. My Dr for my 3 month scopes is the one who found the OC. He told me this morning that the pathology report from my last scope shows I have a problem in my esophagus again. Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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#50358 09-06-2007 04:13 AM | Joined: Jun 2007 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2007 Posts: 32 | I would LOVE to tell my story you can go to www.inthistogether.blog.com and read my story. If you have any questions you may reach me by email. Hope to hear from you.
Donna; Age 50, dx w/ Stage 2, muco epidermoid carcinoma 4/07, maxiolectomy of the upper right palate 6/07, clear margins, no radiation or chemotherapy, close follow-ups.
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