I don't have much to add here. Some of the things on your list, given his recent finish with things, are severe, but not unusual after effects. Others are extreme by the standards of what others have posted over the years here. I would want a consultation with another doctor at this point. If possible from another institution. The treatments seem extreme for this staging, but there may have been issues/circumstances that we don't know about. I would ask the doctor about the protocol that he chose, if it is one that he uses frequently, if these are the kinds of things he sees in patients on it, what other institutions are using it, if it is something that is well published on. You don't say much about what they are doing to manage these things. Have you asked them what they think the duration of some of this will be. When hearing issues came up early in the process, did you bring this to the doctors attention, and did he comment on it, note in in the patient records etc.

But with these severe side effects, I would want a fresh set of eyes on things. Get your own referral to ensure that it is completely independent, and ask for copies of all your records to date. Do not send up any red flags with those that have them, just ask to have your own set, as you may do some traveling to see family or something and you wish to have them with you.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.