HPV Tonsil cancer: I'm very nervous about chemo and radiation

One month post treatment (TORS surgery + 33 radiation sessions)…feeding tube placed between surgery and radiation as a precaution but never used.
After surgery started doing daily routine of exercises 3x/day to strengthen mouth and neck muscles (Stanford University) which greatly helped.
One month since radiation, taste has improved (metallic to salty to buttery to more normal), can eat any type of food except breads and food that takes saliva to help digest. Dry mouth continues to be a problem but using tablets at night and following good dental hygiene practices to prevent problems. Will be starting acupuncture soon for dry mouth symptoms as I have read that acupuncture can improve salivation. Ramping up physical activity and now able to walk 10K steps/day which has helped overall health and length of sleep at night (avg 4 hour block of sleep before waking due to dryness in mouth).
Appreciate reading others experiences on this shared journey, especially those suggesting saliva production increases with time. Wishing all who read this strength and courage.

Having trouble understanding the " Standard of Care" treatment plan I have been saddled with which
is 7 chemo/35 radiation. Not that I will complete all that .
The more prominent cancer treatment centers are at least finally starting to offer more personalized
treatment plans and also trials for HPV driven P16+ if you were to meet their criteria.
So, . Here I am with stage 1 P16+ tonsil cancer being told I need the same plan as a stage3- 4 P16+ tonsil cancer patient. I don't get it . Why is the system so slow to change ?
This particular cancer has been studied and trialed to death for 20 years now. Sheesh.

Hi @woodsy1
Not sure where you are getting treatment but if you are not at an actual cancer center that specializes in Head & Neck, I would go to one for a second opinion.

Good luck on your journey.
Rob

@roblem @woodsy1 I agree. Second opinion.

No radiation or chemo this week. Have 40 Gy and 2 1/2 chemos under my belt to date.
Doc discovered Oral Thrush on Monday and with the throat issues I was having Doc suggested
taking the week off after I mentioned stopping treatments altogether. Throat felt like I had sand in it. Got meds for that
and is clearing up.
First it was Shingles now Thrush.
Pretty sure I will be pulling the plug on future treatments at this point and take the blood test (NavDx)
for circulating tumor DNA to see whether or not the P16+ cancer is still present or not.
Both the med oncology and radiology doc are now on board to working with me on this de-escalated
approach to treatment, just not advocating for it
So I am grateful to them both for not continuing to pressuring me
with the "standard of care" 7/35 approach. That alone caused a fair amount of anxiety knowing the consequences.
Wii check back in with the results in a couple - three weeks , fingers crossed.

@woodsy1 good luck. This will all pass. Im in my 5th week and about 7 more treatments to go.

@woodsy1 Thrush was the worst pain of the entire experience, hands down. Fortunately that nystatin rinse works quickly. Hang in there!

I wish that I would have known about Connect last year, this is my first time here. I was having trouble swallowing and thought maybe I needed to have my tonsils looked at or removed. I had my first throat biopsy Feb. 12, 2025. They found a spot on the soft palate in the back of my mouth. So I then had a PET scan where more was found on my lymph nodes. We had several trips planned including a trip to Las Vegas to watch our granddaughters from Fairbanks play ice hockey and then a trip to Barbados to visit our oldest granddaughter at college which my ENT doctor and Oncology doctor said to take and did more tests in between trips. Then I was sent to Chalmers Cancer Center here in our town where more tests were done. I then had a feeding tube inserted in my stomach and a chemo port installed. I started radiation treatments on April 1, 2025, which was every day, 5 days a week for 7 weeks. During this same time I had 2 chemo treatments. The chemo made me sicker than a dog. I got to where I couldn't eat and had to use the feeding tube taking 6 bottles of Nestle Isosource 1.5 cal a day. I went thru cases of that stuff because it was all I could take for nutrients to keep me going. I rang the bell, that is all behind me now. I am back to eating normal and have no side-effects. My advice is if you suspect something have it checked out early, don't wait.

@deb26 when I had radiation treatments last year my mouth was dry all the time. They recommended getting a vaporizer to help me sleep. I got a small one and had it beside the bed blowing towards my face. It did help me. Good luck!

@albion223 when I had radiation treatments last year my mouth was dry all the time. They recommended getting a vaporizer to help me sleep. I got a small one and had it beside the bed blowing towards my face. It did help me. Good luck!