 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Amy,
I am really sorry you are having to deal with this horrible disease. It is admirable you are trying to protect your parents and in some sense shield them as you gather more information. Should your decision lead you to the conclusion of going through with chemo/radiation, there will be ample opportunity to draw them back in. They would no doubt do the same if the tables were reversed. Find the medical team with the most experience preferrably at a NCCN member institution. Attack with everything you can, you may only get one chance.
Best wishes,
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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