#16724 12-23-2004 05:25 PM | Joined: Dec 2004 Posts: 1 Member | OP  Member
Joined: Dec 2004 Posts: 1 | Greetings,
I was diagnosed with nasopharyngeal carcinoma last year (one of many head/neck cancers). I'm not sure if it truly falls into the category of oral cancer but I know that the treatments that I've undergone have definitely affected me orally.
I went through 7 weeks of intensive radiation with concurrent and subsequent chemotherapy (6 rounds). The doctors were very agressive in treating my cancer since it was pretty advanced by the time it was discovered.
A few months after my treatments were completed I had a recurrence and had to have a maxillectomy/palatectomy. So I guess you can say I've been through it all! ;-)
I was glad to find this website and forum which deals with some of the specific issues concerning this type of cancer. There's a lot of information and resources out there for more common types of cancer, i.e. breast, lung, prostate; but it's not as easy (or hasn't been for me) to find others who have been through what I have or something similar.
I look forward to learning more from long-term survivors and helping anyone I can along the way who may be at the beginning of their journey.
DivaGirl | | | 
#16725 12-24-2004 01:16 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome to the Oral Cancer Foundation DivaGirl!!
Sorry you had to find us but am sure glad you did. You won't find a better forum to get support, information and love than here. You are now part of a huge international cyber family. The bond we share is strong. Ask any question you can think of and someone will answer. Hope you have the best Xmas & a Happy New Year!!
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#16726 12-24-2004 04:50 AM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Hi DivaGirl,
Welcome to OCF. I second what Danny Boy has said. You have already been on a long and arduous journey. Your offer of help and support is greatly appreciated and will be returned right back to you. Here is where you can vent your feelings, have your questions answered, get love and support and be able to help others at the same time. Quite a humbling and rewarding experience.
Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides | | |
#16727 12-24-2004 06:03 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Welcome DivaGirl,
Danny Boy and Jack have certainly summed up my feelings, God Bless and Happy Holidays to you! 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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#16728 12-25-2004 08:33 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Welcome to the site, DivaGirl. Thank you for joining us. I look forward to your input and strength to help those who are just starting down the road. God bless you for contributing.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#16729 12-25-2004 11:17 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear DivaGirl You have certainly had a journey with your cancer. Glad you found the site because your input will be invaluable to anyone newly-diagnosed. I too am encouraged when I see long-term survivors such as Jack on the board. Looking forward to reading more from you. Love and light from Helen 
RHTonsil SCC Stage IV tx completed May 03
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#16730 12-28-2004 10:29 AM | 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 | DivaGirl,
I am glad to see you in the neighborhood! I wish you the best in the new year and may it be the absolute best of your life!
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
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#16731 01-22-2005 03:33 AM | Joined: Jan 2005 Posts: 3 Member | | Member
Joined: Jan 2005 Posts: 3 | Diva Girl, Hi My husband 36 years old was diagnosed with Nasopharyngeal Cancer 3 years ago. He has had reoccurences 2 times. He just finished his 3rd round of chemo and radiation. He has been through a tough road. How old are you? Any questions please e-mail me [email protected]. God Bless you, Paula | | |
#16732 03-24-2005 04:20 PM | Joined: Mar 2005 Posts: 1 Member | | Member
Joined: Mar 2005 Posts: 1 |
Donald Spence
Ocean City, Md
Nasopharyngeal Can-cer-vivor
as of Jan. 2005 I'm 5yrs out!!
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#16733 03-24-2005 07:12 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Way to go Donald!
and Welcome
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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