I wish I had something positive to add...these long term side effects are very difficult. After regaining more salvia, taste, and stamina than expected, at 8 yrs post tx swallowing issues started. My husband passed swallow testing a year ago, but it is definetly becoming more problematic. His cough reflex remains adequate, preventing aspiration for now. Generalized fibrosis of the neck & jaw appears to a major problem.
i have been watching this deterioration knowing that permanent PEG will probably be necessary. I am somewhat prepared for this outcome, but it's been a long time to worry about what is to come.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016