52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer

My follow up appointment went well. I’m scheduled for TORS January 10th for radical left tonsillectomy and a bit of the back of tongue removed and was told to plan on a NG feeding tube for up to 2 weeks. If all goes well based on pathology I’m a candidate for a low dose radiation trial and potentially no chemo. The original cancerous lymph node had less than 1mm extracapsular extension. I’m also in a trail for NavDx blood test that detects HPV in the bloodstream. I took the test as soon as I was diagnosed. If my post surgery blood test numbers shows no circulating disease I can forego chemo. However that’s something I need to really think about. There is also a de-escalation chemo regimen I may want to consider. I don’t want to do the bare minimum and have a reoccurrence so I’m reading up on studies.

I feel well enough to start therapy exercises for my neck tightness and mouth nerve deficits As many on this site have said it’s worse in the morning and end of day but I’m able to loosen it up and minimize the tightness. Thanking God for the positive prognosis and glad I have some time to heal before TORS and enjoy the holidays .

‘Thank you all for the wisdom and encouragement.

Smitty

Post TORS day two - pain meds

I started with 5mg of Oxycodone and some Tylenol every four hours same as my post neck dissection protocol. The nurses said I should consider 10mg to stay ahead of the pain and Docs said same on their morning rounds. I don’t like Opioids but took their advice and glad I did. I was able to sleep a few hours finally and will keep up with this regimen. I was told the pain will get worse around day five. Now is the time to accept all pain meds and heal. I’m on a ton of other meds as well - steroids, Nuerotin. Antibiotics etc all to help me heal. The swallowing specialist will be visiting tomorrow to evaluate swallowing function and give me some exercises to do. Im having difficulty swallowing the thick mucus as it gets stuck halfway it seems and I can’t cough to bring it up. Overall I’m gradually improving and now up to three tube feedings a day. Four more days in the hospital to go.

Fourth day post TORS

Today was an eventful day. A nutritionist visited and went over with me and the Wife how to set up and run tube feedings at home. Then the speech therapist worked with me on starting to swallow. All I can manage at this point is liquids that have been thickened to a nectar. Definitely a chore and painful going down but great to have a taste of apple n my mouth. Thin liquid is too much of a risk for aspiration and apple sauce too thick and got stuck so it will be a slow process just as others had warned me. Pain is also peaking as I was told but staying ahead of it with meds. I was an hour late with a dose today as I wanted to avoid reflux with my feeding and pain spiked quickly. I get off the IV fluids tonight as I’m able to get in 440ml of “food” up my nose now at each feeding so no longer stuck with the IV pole for my laps around the unit and using bathroom. So far so good but my patience will be tested I’m sure with the swallowing progress. Staying positive as others have done this before me and hopefully me journaling this will help those coming after me. It’s all worth the final outcome if no more cancer.

I know these details will fade as the mind wants to forget bad experiences so wanted to get it documented. I’m ready to try to step down pain meds to 5mg Oxy and 650 mg Tylenol every 4 hours tonight. I’m still receiving gabbapentin 100mg per 8 hours and that’s what my discharge instructions for pain management are as well. I swear I’m hallucinating off the higher dose and don’t like it. Charge nurse assured me if things go south I can take the additional 5mg Oxy.