Dear All
if I may ask...
is there any info here (links) that you know of without too much trouble to search for..or words of advice from experience
m husband is 8 weeks out of treatment ( cisplatin 7 weeks and 35 Rad).for SCC tonsillar HPV16.

we went from all taste returning with some good amount of salivary function or so it seemed...
he would get mucous salivary blisters with eating and sweat ( parotids) but had no pain on his tongue, soreness of his throat to eat ( French toast, meatballs, mashed potato.. he was doing amazingly well)
till
now, ..... dry mouth, burning tongue, sores on the inside of his lips and reduced taste and losing desire to eat.
he is so despondent after such a hopeful place two weeks ago.Such a HUGE setback for him/us. he was preparing to have his PEG removed in about 6 weeks prior to this setback ..that is how great he was doing. Gained weight and everything..

he was on gabapentin for tongue zingers but since it has a small % of dry mouth SE.. he took himself off it.
He is using xylitabs, gel, spray, aloe, coconut oil ( those have relieved some of the dry mouth and irritations on his lips) ,,,he is drinking water, sipping, and also papaya ...all with some slight relief.
Ironically, he had a PT apt to learn about lymphedema ( he didn't seem to have any ...though the RO thought he could benefit) as soon as he started doing the massages, his left cheek blew up and so did his salivary gland on L side... so much so he had to use warm compresses for a week now.---with a good bit of improvement in the swelling)

we are baffled how he can go from salivary function and such improvement to such a dramatic change with dry mouth and so much more discomfort)

but now even eating a banana causes a sore throat.,


sigh....such a set back.

he is scheduled and was seen by an acupuncturist and we have a f/u apt this week with M.O.

but...
for the first time... in months..I, myself am feeling so heavy of heart... before it was getting him through the treatment and then it was.. amazing progress post treatment with so much hope...
now,., such disappointment for him.--- for us.

thank you!!