Tongue and tonsil HPV found.

Hi @thebgyn123 and welcome to the H&N group. I understand there has been some success with specific cancer drugs on HPV oral cancers but not sure of any long term studies. Perhaps surgery alone solves the issue. We are all different in that respect. Let’s see what folks say. What does your doctor/ oncologist say?

Will have pathology results Thursday. They suggest radiation 6 x 5 days and possibly chemo

My husband was diagnosed with HPV 16 positive on left side back of tongue as primary site with lymph nodes on left side of neck as secondary. Luckily he was stage 1 and was found during work up for heart and kidney transplant(rejected from listing due to diagnosis). He had 35 rounds of radiation with True Beam 2(5x/week) and 7 rounds of monoclonal antibody therapy, Cetuximab. Advised against chemo due to heart & kidney. Last couple of weeks of treatment and at least 6 weeks after it stopped were tough but so far no reoccurrence. You, too, can get through this!

Not looking forward to it. You spouses and supportive family members should get a medal for what you go through. Thanks to all

Hello thebgyn123 - I had stage 4 squamous cell carcinoma on tongue base and lymph nodes (lots of them), plus a recurrance on vocal chord. Had radical neck disection, chemo + radiation. Hope you found it in stage 1. The side effects of the radiation I think is the worst of it, but I'm not sure it they're offering the same type as in 2006. After years of adjusting to the side effect's "new normal", I probably find the tongue surgical damage the most aggravating. Chasing the cancer, they ended up taking about 1/4 of the right side of it and several good sized divots toward the rear base tongue area. My speech suffers with it getting stiff and "tongue tied" by midday. It's best in the morning, after a night's sleep.

But, the big picture is that I've been clear for over 15 years and resumed 95% of my previous life's activities and just turned 67. It should not be such a long & grueling experience if they've caught it early for you. Good luck!

The prize supporters get is us sticking around a bit longer to torment them. Keep it all in prespective! I raise my glass!

I had the exact same diagnosis back in 2018. My ENT went to the Board of directors and they advised chemo and radiation treatments. That is supposedly the best course of treatment, versus surgery or cancer drugs. Whatever you wind up doing to treat your cancer, your quality of life will definitely change. I'm sorry to say. Your taste of food wont be the same, and you will be very weak for awhile. I wish you the best of luck, and hope you have a good recovery.

Welcome to the group.

Keep in mind that everybody responds differently to treatments.
I’m just informing you of what I went through.
With that said…

At 54 years old I was diagnosed stage IV and had too much cancer for surgery.

Luckily both of my Oncologist, nurse and social worker insisted I file for disability immediately.

This was a devastating situation as I had been receiving a paycheck since the age of 12.
I couldn’t believe that I wouldn’t be able to return to work as a Deputy Sheriff.

I did as they insisted and with the help of the social worker I was approved.

First thing to happen was extraction of my wisdom teeth and bottom molars. Then heal 21 days.
Then feeding tube(peg) and port.
Also the radiation mask was cast.
Then assigned to a nutritionist and given instruction as to what I needed for daily nutrition.
During this time myself, my wife and my parents were introduced to the radiation and chemo departments and instructed as to using and caring for the peg.
We also met the pharmacist who was absolutely the greatest! She detailed my medication so precisely and even gave us her mobile number in case I needed assistance….Amazing!

I received 3 rounds of chemo (cisplatin) and 35 rounds of radiation.

In week 2 just as my team said would happen, my throat shut down and was totally dependent upon the feeding tube!

My medications were keeping the pain controlled very well.

Now the nutritionist was visiting me daily as my weight was dropping…fast!
She was very persistent and hounded me daily…but for good reason!

Yes, I did get sick a couple times due to my own fault….I was instructed to immediately take a couple of a certain meds upon any onset of a headache or flu feeling and I didn’t….Mistake!
That was a rush to the ER one night with rapid increasing temperature.
The ER Dr happened to be our SO SWAT Team Doc and he absolutely went over and above to get me on track and sent me home.
On one other occasion I overlooked an onset of headache and could barely get to the infusion center.
Once there my Oncologist, as he explained, hit me with the big guns! I feel asleep and woke up an hour later feeling like a million bucks!

Post treatment;
Speech therapist was a waist of time and money!

Received hydration infusion 5 days per week for several months.

Remained on feeding tube for nearly a year as I could barely drink water!

Monthly oncology visits and throat scopes.

A couple PETCT which revealed awesome results!

My speech is that of a person under the influence of alcohol and my eating is still restricted.
I need to concentrate and not be bothered or talk while eating and have lots of liquids!

My energy levels are way low and my thought process is extremely diminished along with brain fog and migraines!

I am a dual purpose K9 trainer and teaching students and training dogs is my passion.
I cannot do this daily due to my chronic condition.
I tried transporting vehicles for a dealership but my migraines and or thought process kept me from being able to do that…safely!

I’m sure I left out a bunch but hopefully this gave you some insight of some potential issues.

Nonetheless, I will be 7 years out this December and I’m still ALIVE!

You can do it too!

MOJO

PS
As for pain management;
I didn’t want any narcotics but I had no choice.
Being in my profession I dealt with too many addiction problems and didn’t want to fall into that trap.
Though I was on these meds including Fentanyl for several months, I was able to wean myself off without my doctor’s even knowing.
When I arrived for an oncology visit my doctor asked how my pain meds were holding up and I said I’m no longer taking them.
He was absolutely astonished and was very happy with my method of elimination!

@thebgyn123, I hope your appointment went well. Did your oncologist lay out the proposed treatment plan? How are you doing? I bet you have questions. Fire away.

It's been a while since I updated. After 35 radiation and 5 chemos and recovery since August, latest scan was looking good.
Still have saliva and taste issues but weight coming up again. Tongue is sore and still radiating but managing to get food down.
Oncologist checks to be done every 3 months.
I had to let go my need to control and trust my doctors. So far they have been right on the money. I know it's scary but your family needs you around. That's what kept me going.