#19683 02-13-2006 08:22 PM | Joined: Feb 2006 Posts: 1 Member | OP  Member
Joined: Feb 2006 Posts: 1 | I'm new to this. Had my entire nose surgically removed on Nov 29, 2005 after 40 radiations sessions did not stop the cancer. I have been told I have to heal five months before I can get a prosthesis. I've been through the worst of it; doctors say they got all of the cancer in that area and chances of it coming back somewhere new are slim. So, at this point, I think I am a survivor. Would like to hear from others with same experiences; hopefully we could help each other. I had a major problem with vision since I need glasses to see well and had a problem holding them on my face. I have found a way to do it and would like to share that with anyone with the same problem. | | |
#19684 02-14-2006 04:00 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | That sounds about right on the wait for a prosthetic device. Sorry you had too lose your nose, but better the nose than your life.
God be with you.
Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#19685 02-14-2006 07:46 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | One concession for what it is worth. UCLA is the premiere maxillofacial prosthetic hospital in the US. The department is run by an OCF advisory board member and long-term friend, Dr. John Beumer. This guy literally wrote the book. The clinic there is on the cutting edge of the technologies available.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#19686 02-16-2006 07:30 PM | 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 | JB,
Don't THINK you are a survivor because you were one as of the day they confirmed you had cancer. Wishing you only the best,
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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