 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Good to see you again DM32ASA. I hate you are now dealing with this but the good news is there are a lot of advancements in this area. If your surgeon isn't concerned please find someone who is. Maybe have your dentist make some calls. Get on it fast and hard and get something done. I assume you are speaking of ORN.
Current trials are under way in Europe that combine a lot of things tried here. Things such as HBOT, Pentoxyfilline/tocopherol with a bisphosphanate are among things working. Even some studies by PerioSciences found improvements by accident when trying to help xerystomia.
You are in a state that understands this very well. Be your own advocate.
Best wishes.
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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