Ed
After my cancer came back when the
Erbitux did not work, my CCC gave me carboplatin which seems to have done the trick in mopping up what radiation missed. It's a platinum based drug, just like cisplatin but without the hearing issues. Unfortunately it's been around a long time and there is no money or energy around doing clinical trials proving it's efficacy conclusively. All the money & energy is going to
Erbitux and other monoclonal drugs w/o platinum. But it could not hurt to ask your doctors to consider switching.
I can relate to the mouthpiece and mask being tight. The second time around I insisted they modify my mask to make a big mouth opening and I just wore my fluoride trays plus I took Ativan. So that's my suggestion.
While the cisplatin is brutal, they are still doing a clinical trial to see if
Erbitux works as well as cisplatin which is still the "gold standard" for Base of tongue TX (not for all oral cancers). Take a look at how great it worked out for David CPA who did the traditional route instead of my experimental one (for base of tongue). So while this is going to be tough, you can and will beat it IMO.
Charm