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@woodsy1
No need to apologize:)

The part I’m still weighing is the chemotherapy component if I’m randomized to the standard/long-arm treatment.

In that arm, chemotherapy is given as high-dose (bolus) cisplatin every three weeks during a 6–7 week course of radiation. This approach has strong evidence for cure, but it also carries a higher risk of acute side effects for some patients.

Outside the trial, another commonly used option is weekly lower-dose cisplatin given alongside the same standard 6–7 weeks of radiation. Many centers use this to improve tolerability, even though the long-term outcome data are somewhat less definitive than for the bolus schedule.

My decision isn’t about avoiding treatment—it’s about whether I’m comfortable accepting the possibility of being randomized to the high-dose cisplatin schedule, versus choosing the weekly approach upfront with standard radiation.

I’m trying to balance proven effectiveness with quality-of-life considerations, and that’s the part I’m actively thinking through right now.

Best to you!!!

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Replies to "@woodsy1 No need to apologize:) The part I’m still weighing is the chemotherapy component if I’m..."

@justwow
Sounds like you are on the right path doing the research and weighing best options.
We can certainly learn a lot from other people's past experiences with different treatment plans and outcomes so am thankful for this forum and people willing to contribute already.

If you haven't seen the excellent links roblem posted on the other thread titled "HPV Tonsil cancer: I'm very nervous about chemo and radiation" do read through ALL of those.

I was diagnosed Oct 2 2025, T1 N1 M0 HPV P16+. Right tonsil, right node. Stage 1. the tonsil tumor was 3,5 cm and node was 1.5 cm . By the time treatments started the tonsil was probably 4.5 cm. Took almost 3 months for treatment to get lined up with all the tests, scans, consultations and scheduling so that all made me a bit anxious.
Am now 11 radiation treatments and 2 chemos in.
Done with chemo that cesplatin 74 mg dose per cycle 1 week apart really wreaked havoc on my body, immune system and digestive tract.
A shingles outbreak and minor cuts or abrasions became infected.
Noticed blood work showing low RBC red blood cell count after 2nd week chemo. Other blood tests showing changes as well all heading in the wrong direction.
Anyway long winded today getting excited about finishing radiation next week . I am dropping out at 16 radiation treatments. The tumor is hardly visible anymore. My call based on compelling research data, trials and studies.

Let the dust settle while I still have some quality of life left and see what a pet scan shows in 3 mos. and go from there. My years here are growing slim anyway so I'm ok with my choices. I've had a good run. Best of luck to you and whatever you choose to do. Keep up the fight.
Just my opinion but the standard of care 35 radiation treatments and 7 chemo cycles seems like an antiquated plan for most any P16+ oropharyngeal cancer patients today . Keep researching and I bet you will come to the same conclusion.