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

One additional comment on increased dosages of IMRT. I had similar diagnosis (tonsil cancer that had spread to multiple lymph nodes on both sides of neck. Initially staged at 4b. HPV P16 confirmation changed stage to 1b. I didn’t meet the NavDx minimum number after 25 treatments, so finished up with all 33 and 69.9 Grays. Also completed 3 Cisplatin and 2 Carboplatin chemotherapy. ( missed 2 due to toxicity). All in all, my mucositis was handled fairly well with “magic mouthwash”, no issues with dysphasia and xerostomia (dry mouth) was an issue but lots of biotene dry mouth wash, Act dry mouth lozenges, sprays, etc. It has improved over first year. Pain was not severe and Mayo Pallative care were on top of the issue! So, unfortunately sometimes the full treatment can’t be avoided but I’m 2years and 9 months out and all is clear and basically back to normal, and I’m not saying that “new normal “ crap, Normal! Stay positive, as he said be your advocate and have faith!

@woodsy1
This is really useful information. I was originally asked to join the de-escalation study only to be pulled later. I offered to cover the cost of NavDx but it still was not offered. It also may have been due to timing but I was mainly interested in data to show the treatment was working. I figured why go through all this only to find out there was no response? I never had the discussion about toxicity or the benefit of reserving some Gy for the future. But I definitely recall a concern for overall treatment and the level (maybe >20) when they work to get you on proton.

Some generic guidelines below for IMRT radiation treatments along with the acute and long term consequences depending on dosage and number of treatments.
Not sure how much Proton therapy differs and that was not available to me.
Having HPV P16 + Head and Neck cancer may require much less chemo and radiation than some cancer treatment centers are willing to admit as I can attest to.
Anyone could have their pos. or neg. cancer status checked during treatment with a blood test for this P16+ offered by Naveris labs its called the NavDx test. Medicare and the VA will cover the costs not sure about other insurers. $1,800 out of pocket
I would want to be tested before going over 50Gy worth of radiation and did get tested at 48 Gy. Test came back negative for cancer. A short pause in treatments of a couple weeks to get tested might be beneficial to possibly prevent further treatments and worsened long term toxicities.
Just my thoughts now that I've been through it.
The NavDx test may not be offered which it wasn't where I was treated but you can let your providers know you are aware of the test , request it and maybe get it worked into the schedule possibly preventing unnecessary treatments and some long term toxicities.

"Overview of IMRT in Head and Neck Cancer"
"Intensity-modulated radiation therapy (IMRT) is a sophisticated technique used to treat head and neck cancers. It allows for precise targeting of tumors while minimizing damage to surrounding healthy tissues.

Toxicity Comparison by Dose Ranges
The toxicity of IMRT can vary significantly based on the radiation dose administered. Below is a comparison of toxicity levels across different dose ranges:

Dose Range (Gy) Common Toxicities Observations
30-40 - Mild to moderate mucositis- Some dysphagia Generally well-tolerated with manageable side effects.
40-50 - Increased mucositis- Higher incidence of dysphagia- Risk of xerostomia More severe side effects; careful monitoring required.
50+ - Severe mucositis- Significant dysphagia- High risk of long-term xerostomia High toxicity levels; may require supportive care and interventions.
Key Considerations
Dose Escalation: Higher doses (above 50 Gy) can lead to increased toxicity, particularly affecting the mucosal lining and swallowing function.
Treatment Planning: IMRT allows for dose escalation while aiming to spare critical structures, but careful planning is essential to avoid excessive toxicity.
Patient Monitoring: Patients receiving higher doses should be closely monitored for acute and late toxicities, ensuring timely interventions.
Understanding these differences in toxicity is crucial for optimizing treatment plans and improving patient outcomes in head and neck cancer management".

I'm glad they help! I'm still using two years out although my dry mouth has definitely improved with time.

@johnbonani xylimelts are a life saver….

@rllampton
I had my surgery and treatment at the Mayo in 2018. The head & neck team is the best. The compassion, care, and expertise are unmatched. You are in good hands. I wish you all the best.
Regards,
Phil

For those of you who have been following or are interested in my recent HPV P16+ cancer journey and treatments
here is a brief summary.
Chemoradiation was the treatment plan and ended up getting a total of 241 mg Cesplatin
over 4 cycles and 24 radiation treatments (48Gy) over 6 weeks. Took 1 week off due to swallowing difficulties after week 4 . Treatment ended Feb 12, 2026
2 weeks ago had a blood specimen sent to Naveris Lab for cancer screening and am happy to report that the test has come back negative !
So, due to my extensive research on the HPV P16+ de-escalation trials and studies dating back 20 years or more
I was convinced I didn't need the standard of care treatment plan ( 7 chemo/35 radiation) being offered at a stage 1 , T2N1M0 and chose to end treatments early. Honestly my throat was fried already.
BTW the tumor was up against the uvula center of throat when treatment started so fairly large .
So take away from it what you may , hope this helps someone else about to go through this .
You really need to advocate for yourself , your body, your life, your call.
IMO standard of care plans for this specific type of cancer are outdated for cases caught early .
Some trials going on now are using 2-3 chemo cycles and 30-36 Gy total with great success if you were to meet the qualifications.
Also want to say thanks to Mayo Clinic for this forum and to everyone here who offered valuable information and support, Thank you !

@lummy I just found out that I have HPV + tonsil cancer and tomorrow I head to the Mayo for a PET and to meet the care team. So as of now I do not know what the plan will be but hopefully I will know more by Thursday.

@lummy Xylimelts worked great for me.!

@rllampton was it HPV cancer and where was it located? I had HPV tonsil cancer. I am seven years out following surgery, radiation, and chemo.
What is your treatment plan?