Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Destiny,
I really feel for you. I finished Oct 2003 and some days my tongue is just a big blob stuck to my mouth. I had the Ethyol about half of my treatment before I had the violent reaction. I have tried Salagen, Evoxac, too, but not much success. It seems like the first thing in the morning I am having to teach my throat how to swallow each and every day. It takes 30 minutes to an hour. I try to spit some days it it just hangs there. I tried chewing gum but it disintegrates into little tiny pieces after a while. I still eat Cheetos and sometimes potatoe chips turn into mashed potatoes. I buy water by the truckload and can go a bit without it. Tonight I had Subway without any water and towards the end it was pretty rough but I did it. I believe it is just life right now and one of those things that reminds me that I am on this side of the ground, enjoying everything coming to life this spring.
My ENT told me to stop drinking coffee as it will only make it worse and after not drinking it for over a year, I enjoy many cups a day.
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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