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.