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

Hi @woodsy1

In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds (7 weeks) of Photon radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever as I got a second opinion from Froedtert & Medical College of Wisconsin Cancer Center who said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct. In addition, cancer free in March of 2009.

Unfortunately, I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil. In addition, in 2025 had basil skin cancer in 3 different spots. Knowing what I know now I would only accept the Proton and not Photon for any radiation treatments.

One thing I am finding out is this big de-escalation Head & Neck cancer treatments coming about especially for people who got it as a result of HPV. I attached some articles on it here. Also, I talked to my oncologist recently and he said I would have four different options if I had tonsil cancer today.

You will get better. Hope this helps. Good luck.
Best,
Rob

Hello from a fellow 67 yr old male HPV+ tonsil T 2 and 1 lymph node cancer treatment patient. (current)
Just got started with chemo (cesplatin 74mg) ) and IMRT radiotherapy, have now had two chemo days and 5 radiation treatments. An ENT surgeon with robotic technology balked at a surgery.
Proton therapy is not available at this clinic or anywhere within 100s miles unfortunately.
Standard of care treatment plan of 7 chemo days and 35 radiation days (70 gray) but highly doubt it will need to be completed with the rapid progress being made already. I get to look at this tumor in the back of my mouth w/flashlight after each treatment and it is already 1/2 the size it was when starting. Totally amazed at how well this therapy is working .
Yeah some side effects from the chemo so far and expect it all to get worse before better but the options of not doing anything are worse. I could already feel this thing growing down my throat when treatment started.
Have discussed this with the doc and was given the ok to end treatment when and if desired . He is stuck with the standard of care plan and evidently is not permitted to end treatment early so from my research on trials and study's it seems with my personal situation I may only need 1/2 -2/3 the treatments . Its call de-escalating treatment in the cancer world and is to help minimize all the side effects.
Makes you wonder how much of the standard care treatment plan is backed by money/income for the clinic. Was diagnosed approx 3 months ago and have met dozens of people in the medical world and faced treatment delays from tests and scheduling appoints. Its a busy field these days.
Anyhow good luck to anyone going through this . There is lots of reading out there on trials and study's NIH is a good source where they pull a lot of studies together to view.
Be your own advocate for de-escalation you can make your own calls on the standard of care treatment plans which most clinics are using.

Hello from a fellow 67 yr old male HPV+ tonsil T 2 and 1 lymph node cancer treatment patient. (current)
Just got started with chemo (cesplatin 74mg) ) and IMRT radiotherapy, have now had two chemo days and 5 radiation treatments. An ENT surgeon with robotic technology balked at a surgery.
Proton therapy is not available at this clinic or anywhere within 100s miles unfortunately.
Standard of care treatment plan of 7 chemo days and 35 radiation days (70 gray) but highly doubt it will need to be completed with the rapid progress being made already. I get to look at this tumor in the back of my mouth w/flashlight after each treatment and it is already 1/2 the size it was when starting. Totally amazed at how well this therapy is working .
Yeah some side effects from the chemo so far and expect it all to get worse before better but the options of not doing anything are worse. I could already feel this thing growing down my throat when treatment started.
Have discussed this with the doc and was given the ok to end treatment when and if desired . He is stuck with the standard of care plan and evidently is not permitted to end treatment early so from my research on trials and study's it seems with my personal situation I may only need 1/2 -2/3 the treatments . Its call de-escalating treatment in the cancer world and is to help minimize all the side effects.
Makes you wonder how much of the standard care treatment plan is backed by money/income for the clinic. Was diagnosed approx 3 months ago and have met dozens of people in the medical world and faced treatment delays from tests and scheduling appoints. Its a busy field these days.
Anyhow good luck to anyone going through this . There is lots of reading out there on trials and study's NIH is a good source where they pull a lot of studies together to view.
Be your own advocate for de-escalation you can make your own calls on the standard of care treatment plans which most clinics are using.

@lizzyj58 WOW! Just plain wow! I was in the Mayo study that looked at shortening treatment. So glad its coming to fruition. MSK is doing great work. I read their newsletters. Medicine is making real advances for H and N cancers.

Hello from a fellow 67 yr old male HPV+ tonsil T 2 and 1 lymph node cancer treatment patient. (current)
Just got started with chemo (cesplatin 74mg) ) and IMRT radiotherapy, have now had two chemo days and 5 radiation treatments. An ENT surgeon with robotic technology balked at a surgery.
Proton therapy is not available at this clinic or anywhere within 100s miles unfortunately.
Standard of care treatment plan of 7 chemo days and 35 radiation days (70 gray) but highly doubt it will need to be completed with the rapid progress being made already. I get to look at this tumor in the back of my mouth w/flashlight after each treatment and it is already 1/2 the size it was when starting. Totally amazed at how well this therapy is working .
Yeah some side effects from the chemo so far and expect it all to get worse before better but the options of not doing anything are worse. I could already feel this thing growing down my throat when treatment started.
Have discussed this with the doc and was given the ok to end treatment when and if desired . He is stuck with the standard of care plan and evidently is not permitted to end treatment early so from my research on trials and study's it seems with my personal situation I may only need 1/2 -2/3 the treatments . Its call de-escalating treatment in the cancer world and is to help minimize all the side effects.
Makes you wonder how much of the standard care treatment plan is backed by money/income for the clinic. Was diagnosed approx 3 months ago and have met dozens of people in the medical world and faced treatment delays from tests and scheduling appoints. Its a busy field these days.
Anyhow good luck to anyone going through this . There is lots of reading out there on trials and study's NIH is a good source where they pull a lot of studies together to view.
Be your own advocate for de-escalation you can make your own calls on the standard of care treatment plans which most clinics are using.

Check if there is a Memorial Sloan Kettering in your area. They have an ongoing clinical trial for head and neck cancer. If qualified, they have a specific pet scan that is done on day 10 of treatments. If results come back non hypoxic then treatments are shortened. My husband just went through this,he had 15 radiation treatments and 2 chemo sessions with lots of hydration infusions as well.

@roblem
Thank you for the info. I quit after 29 rounds of radiation and 3 cisplatin. Couldn't take the strangling phlegm from the radiation that kept me awake all night. My blood went out of spec after 3 chemo sessions. Fortunately this was enough to kill my cancer.

What clinic treated you and provided the electro acupuncture? I'll contact them for guidance. Thanks!