New HPV-16 back of tongue cancer diagnosis and treatment to date

Part 1 of 2.

Hi. I will jump right in and say that I would be glad to answer any questions anyone may have after reading my recent history below.
I was diagnosed with HPV-16 related squamous cell carcinoma of the back of tongue in early November 2024.
My first wife passed in August 2007 from medullary thyroid cancer (MTC), a more rare variety of thyroid cancer. She had entered a drug trial at Mayo Clinic Jax upon initial diagnosis give the absence at that time of any type of disease-specific drugs against MTC available at that time. Her initial response to the trial drug was fantastic. The treatment/care she received at Mayo was fantastic The damn cancer found a way around the treatment though. Biomarkers which originally went very high, initially almost disappeared, then re-appeared and I lost her in August 2011.
I must say that the trial drug side effects were very rough on my wife: she was tough in return, very tough. However, I know she responded by deviating somewhat from the protocol. To this day, I wonder if such deviation was wise. We tried other trial drugs and visited MD Andersen in Houston to investigate any options available from them. None were.

I say this to all of you to encourage you to stay tough. To stay on protocol, whatever one you choose, and to not deviate without informing your doctor and discussing your thinking with them. Such a discussion could save your life.

Now for more of my history. I knew Mayo Clinic from my first wife's experience here. I trusted Mayo Clinic then and returned because of that experience. Upon confirmation of the SCC back of tongue cancer by my local Tallahassee ear, nose and throat doctor (and confirming biopsies), I called Mayo to discuss the options they offered. Research showed some trials in progress for my type of cancer. Basically research being done is to explore the reduction of the number of chemo and radiation treatments required to eliminate the cancer and thus reduce harshness, frequency and risk of both short and long term adverse side effects.
If caught in time, standard of treatment procedure for my type of cancer appeared to be TORS surgery (a very precise, least invasive surgery), 4 to 6 weeks of recovery, and then as little as 2 weeks of radiation and possibly including some chemo treatments. My cancer had spread to a lymph node (4.7cm) and also crossed the mid-line of the back of my tongue. Both factors basically eliminating me from the surgical option.

My option in a new trial was radiation and chemo (cisplatin). Radiation 5 days a week. Cisplatin once a week. As explained to me, cisplatin is given in a low dose (40 whatevers, each week) and basically the cisplatin acts as an agent that makes the tumors more receptive to the radiation. The radiation ultimately doing 95% of the cancer elimination work and the cisplatin 5%.
A key part of the trial protocol is the reduced number of radiation treatments, only 28 (5 weeks and 3 days) instead of the 35 (7 week) called for in the current Mayo standard of treatment care protocol.

To succeed in the trial, "succeed" being my word for it, after only 4 weeks of the above-described treatments, I would receive another blood test and the HPV-16 biomarker in my blood would have to totally (100%) disappear.
Note: Shands UF is currently conducting a very similar trial using a 5 week treatment time frame and measuring 4 week "success" as a 95% or better elimination of the biomarker.

So now to my experience receiving the treatments.

< See part 2 of 2 of this message. The Mayo Connect site did not post this message when delivered in one piece, so I have broken it into two parts for anyone interested.>