Ron,

I had the amifostine (Ethyol) and made it through about half of the radiation before I developed an allergic reaction. It was not pretty but I am glad that I could tolerate as much as I did. I had field radation and am now eating everything (in sight, unfortunately) and try to eat an entire meal without water. I even started drinking coffee again and even though it tends to dry my mouth out, I love the taste. Everything tastes different at different times and I have learned, for example, to not eat anything sweet before my coffee if I want to enjoy the flavor more. I eat bagels, or any type of bread for that matter and I think I struggle because I have no back teeth more than anything. It is hard to chew the stuff up completely without the chompers. I eat spicy foods, Thai peppers even. I was going over to a Thai friend's house regularly for meals and I finally cut it back to less frequent because they just load up stuff with fire. I pickled some Jalapenos and I don't know if it was all the rain last season but they are much too hot for me and when I bit into one I had to reach for the miracle mouthwash to numb my mouth eek !

I fully understand your treatment versus quality of life issues. I would have an easier decision because as long as I can do anything about it, I want to spend as much time with my wife and kids as I am allowed in this life. I hope everything works out for you just as you expect it.

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