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

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IMO standard of care plans for this specific type of cancer are outdated for cases caught early .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?

Hello @deb26 i ma 7+ years out from HPV tonsil cancer surgery, radiation & chemo treatment. Dry mouth has always been an issue for me. My partner, Jeanne, found a mouth lozenge called Oracoat XyliMelts for Dry Mouth Night Time or Day. They stimulate saliva production. I get them on Amazon. The drug stores have them as well. They may be worth a try.

@rllampton
Great that the process is moving along quickly for you.
Research is your friend and going into treatment with good knowledge of this particular cancer is to your benefit as the Drs. and staff often don't have time to cover all the toxicities that something like chemoradiation comes with.
The long term ones especially.
Cancer treatment is a very busy field these days.
Hopefully you can get into a de-escalation treatment program which Mayo may offer depending on the stage of your cancer and number of lymph nodes affected .
The less chemo and radiation cycles the less potential long term damage to healthy cells .
Disclosure: I didn't know anything about cancer 5 mos ago.

@woodsy1 thank you, yes so far I don’t know much other than that it is cancer. PET scan on Thursday and then a meet with care team. So for now just learning a bit about this type of cancer and once I get through the scan, hopefully we can put a plan in place.

@rllampton
Thanks just curious . Heartbreaking words " you have cancer". But we seem to rebound
after a spell and just do what needs to be done , get into treatment.
My dentist noticed a lump in my throat and said you need to see an ENT. A week later I
got those heartbreaking words.
Funny thing is I kept busy through all of it except a few down days after 3-4 weeks of chemo radiation.
Was able to function normally through most all of it drove myself to and from the facility etc. So its all doable like so many others here that have gone before us can tell you.
Try to keep a good attitude and your chin up and you should do ok.

,

@woodsy1 a couple different times over this winter. I noticed a fairly large infection in my throat. Thought it was just your typical sore throat. A little bit then it got kind of large and gross looking so I went to see my family practitioner agreed it was not normal looking and sent me to ENT they did the biopsy just last week and found out it was cancer.

@rllampton Please keep us updated.