Hi Jellybean,

Be sure to try, try and try (it is this enough emphasis?) to swallow *something* -- even if only sips of water or liquid nutritonal formula -- during treatment. Make sure you have adequate pain control to allow you to do this (if it is a matter of pain, which is usually is).

It is all too easy to lose the ability to swallow through disuse during treatment, our ENT and also, onc nurses have many stories of foks permanently on PEGs who didn't have to be but who stopped swallowing and everything went (as the Brits says) pear-shaped.

You should make sure to have a swallowing evaluation done about 4-6 weeks (depending on healing) after the end of treatment. The therapist will prescribe exercises to strengthen and restore normal speech and swallowing if these have been impacted by radiation or surgery. My husband actually ate all the way through treatment, never used his PEG, but still had a number of swallowing issues due to radiation damage. By religiously doing the exercises he was pretty much back to normal within a few months and now 18 months out, is fine.

Tonsillar cancer is highly likely to be due to human papilloma virus, at least in non-smokers -- have you been tested for this? It has a far better response to treatment and also, far less likely to recur after successful treatment. Ask your doctors about this -- testing can be done at Johns Hopkins if your hospital doesn't have the facilities.

Gail