 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Don, ORN has never been on any of my lists. I don't know that there is a lot you can do other than things like PerioSciences products that have been shown to repair early stage ORN and read up on studies. There are so many things that can pop up, you will never be ahead of the curve when you're number is up.
At 16 months, I would look for a "Dental Oncologist". They study cancer related and especially radiation issues. I found the first one by asking the Cancer Center where I was treated. The second one I found through OCF and my wife, simultaneously.
First, I would put together a list of things you want to do. Before the "Bucket List" came out, I used to call the list "The Top 10 Things You Want to do Before You Die". I encourage people to compile that list after diagnosis. Then you just keep on tackling the list till it's done.
Now get out there and do some living to keep your mind from wandering.
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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