Hi Larry and caring wife,
I started my chemo and radiation one year ago today. Stage 4 HPV positive tonsil cancer. I changed ENT doctors before consulting with a radiologist. My first one didn't like to answer questions.
I went to a NCI(National Cancer Institute) doctor since my supplemental insurance would pay for the consult. Glad I did.

Since I was self pay until 2014, the doctor said we could wait on the Pet scan and CT scan (both with contrast) until 3 months after the end of treatment. I still had laryngoscopies until the scans. Doctor said a later scan would also reduce the chance of a false positive due to a bit more healing of the effected tissues.
There will still be some hard times ahead. Floods of mucus, thrush, pain, lymphedema, dry throat, loss of taste or worse - odd tastes. I also suffer from allergies on top of everything else. Here are some suggestions:
Sleep with your head and upper body slightly elevated and use a humidifier. Also, drink plenty of water -lots of water. For me, Fuji water had the least offensive taste and smell; but, this may have been due to my burnt nasal passages.
Nasal rinses may help. For me the rinse would make me gag especially in the first couple of months after treatment.
Keep your mouth clean. Salt and baking powder rinses. Floss and brush with a mild toothpaste like Biotene for dry mouth.
Just today I had some lymphedema in my right jaw and neck, probably since the allergens are a bit high right now. I just massage the area to reduce the swelling. There are other remedies like a stretchy wrap if the skin is not still sore.
The pain was mostly bad when trying to swallow food. I needed to take a pain pill for the first few weeks after treatment. I would take the pill 1 hour before eating since the pain relief only lasted a couple of hours.
I would have to drink lots of water in order to be able to swallow. Food would get stuck in my throat, don't panic and inhale, just drink some more water. Don't eat to late in the day or you will be up every couple of hours at night to pee.
Do some mouth exercises, open your mouth wide and move your tongue around.
I drank lots of whole milk shakes flavored with chocolate and supplemented with whey protein and a bit of dextrose. Protein and calories are needed for a healing body.
I still get laryngoscopy examinations.
I am still seeing improvement in my salivary function and ability to taste even though it is in very small steps.
Hang in there Larry.


6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9