 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Now I am engulfed by the flames of late effects, I better understand why doctors don't tell us all that we will face. For everyone I know, I have yet to see any 2 with the same issues. Why worry everyone when in reality they will only have a few of many possibilities? Even considering every bad day, the good far outweighs the bad. If I had known what was ahead, could anything have been done different to prevent it? I don't think so. It has been invaluable for me to have email and mobile numbers for my medical team. We get more done through the messaging component of the electronic charting system than face-to-face appointments.
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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