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

Posted by 4dogsrental @4dogsrental, Jan 9 11:28am

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.>

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

4dogsrental | @4dogsrental | Jan 27 7:40am

In reply to @diacona "Your treatment log is spot on to what I have been through. My story is pretty..." + (show)

Hi diacona. Praying for you to have great result on your Pet scan on Feb 10. Mine is Apr 10👍🙏🙏☘️☘️ sorry you have had a difficult time post end of treatments.
Do you have any ability to taste food or drinks yet?

4dogsrental | @4dogsrental | Jan 27 7:42am

In reply to @sepdvm "@4dogsrental you are doing so well and that makes me very happy. Again, taking the time..." + (show)

Thank you very much Sue!

christiholtorfhomes | @christiholtorfhomes | Feb 14 6:16pm

In reply to @4dogsrental "Part 3 Week 4 Only 4 radiation treatments (off for Christmas) 1 cisplatin chemotherapy treatment (30);..." + (show)

@4dogsrental

Part 3
Week 4
Only 4 radiation treatments (off for Christmas)
1 cisplatin chemotherapy treatment (30); blood test showed low magnesium so magnesium added to IV during chemotherapy session
2 hydration sessions
NavDX blood test on Day 20 of treatments

I ask for sonogram to guide technicians/nurses into my veins for chemotherapy and hydrations sessions. Started asking after two successive events where it took 4 tries to get the needed insertion to do the job.
Asked for “Magic Mouthwash” (lidocaine, Benadryl, etc) prescription as the throat/tongue pain becoming more noticeable, but still manageable. To date, have never used this Magic Mouthwash.
Also, doctors detected some Thrush on tongue and mouth lining. Started Fluco-something to treat the Thrush. 2 weeks/one pill daily. Thrush eliminated after 14 days but still got some mucotosis? Did a lot of mouth washing with the salt/baking soda combo; no use of Magic Mouthwash. Please consider gargling a lot. I got a sore on the side of my tongue that has remained for a couple of weeks and it hurts. I can only imagine if I had multiple sores which I know some people have experienced. I am so sorry for them as the additional pain of the sores on top of throat/swallowing pain is very real, I am sure.
Initiated Extra Strength Tylenol use when warranted for pain.
Realized during this week that I was losing taste. Gradually became a loss of all taste altogether by end of Week 4.
I had the 4 week blood test using NavDX on the day of my 20th radiation treatment. Test examines a specific biomarker for the SCC HPV-16 type. Target was to see if the biomarker was eliminated from my blood. Took 6 days for results during which time I continued with another 5 radiation treatments and 1 more cisplatin chemotherapy session.

Week 5
4 radiation treatments (New Years Day off)
1 cisplatin radiation treatment (30); blood test showed low magnesium so magnesium added to IV during chemotherapy session
2 hydration sessions

Noticeable increase in pain in throat/swallowing; no avoiding it. Taste totally gone.
I love the radiation machine as I get in it and focus on the rays destroying my tumors. Staff plays Bruce Springsteen for me every session (I have seen him approximately 70 times). I close my eyes and listen to The Boss. Did not open eyes once during any session.
Even a well-chewed banana burns my throat at this point. Now it is tough to force the swallowing of any fluids and food, even when food is chewed up to a mush. Have to wash every mouthful down with a fluid, and that still hurts. This sucks but has to be done.
Note: I was trying to get down to 200 pounds before my diagnosis. And I had done so. But upon diagnosis and hearing about the likelihood of having difficulty eating during treatments, the docs gave me license to add some weight before starting treatments. I started treatments at 205. By radiation session #28, I was down to 184; a 21 pound loss or slightly over 10%. The staff and nurses had said during instructions about the treatments that they preferred to see only a 5% loss. This weight loss is manageable to me as I intend to use my low body mass index to build a stronger, more fit body when the side effects of radiation and chemotherapy are all gone.

Jump to this post

These post are so helpful! Thank you so much for writing them. I start the Dart 2.0 program for HPV cancer on Monday. I had surgery for a tumor at the base of my tongue and a bilateral neck dissection removing 21 lymph nodes (2 showed cancer). The surgery was in December and I had a negative NaV DX test (so a 0) 2 weeks after surgery. My treatment will be 10 days total Monday-Friday starting Feb 17 and ending Feb 28th. It will include 2 rounds of radiation every day for those 10 days, one in the morning and one in the afternoon. I will also get 2 rounds of
docetaxel, 1 round on both Mondays. Sounds like your treatment was 5 weeks. Did you get the option for 2 weeks? Again, thank you so much for taking the time to write about your experience, it really is so helpful.

Colleen Young, Connect Director | @colleenyoung | Feb 14 8:39pm

In reply to @christiholtorfhomes "These post are so helpful! Thank you so much for writing them. I start the Dart..." + (show)

Welcome, @christiholtorfhomes.
For anyone unfamiliar with DART 2.0, it stands for de-escalated adjuvant radiation therapy, a treatment for patients with HPV oropharynx cancer. You can read more about it at Mayo Clinic here:
- De-escalated therapy improves quality of life following oropharynx cancer treatment https://www.mayoclinic.org/medical-professionals/cancer/news/de-escalated-therapy-improves-quality-of-life-following-oropharynx-cancer-treatment/mac-20538563

I agree that @4dogsrental's detailed experience is really helpful.

@christiholtorfhomes, rest well this weekend. 🙂 Do you have any questions about what to expect? May I ask which Mayo location you'll be getting treatment (sun or snow)?

christiholtorfhomes | @christiholtorfhomes | 6 days ago

HI Colleen! Thanks for the info. I'm getting my treatment in Az. First chemo and radiation today. Because I'm [art of the 2 week dart program, I had 6 appointments to day. The day was very smooth!

stephenrfleury | @stephenrfleury | 5 days ago

I was treated at Mayo 4 years ago for SCC on the base of my tongue and a couple of lymph nodes. I wasn't a surgical candidate so I had radiation and chemo. At that time they were trying to reduce the radiation received. For me, I received 70 gys over 33 sessions (5 per week) , rather than the same amount over 35 sessions, plus weekly chemo. I would think less radiation over fewer sessions would be very helpful since the radiation seems to be the main cause of side-effects.

Good luck!

lrogers785 | @lrogers785 | 3 days ago

Hi, my husband had the hp16 squamous cell start on left tonsil, went into soft palette and cheek. Had targeted radiation and chemo. He now has a thick mucous in back of throat, has been on a feeding tube since July of last year. Goal is to get him off feeding tube. Do you have any tips and tricks that we could do to lessen the thick mucous in throat. Thank you.

cecelia19 | @cecelia19 | 2 days ago

In reply to @4dogsrental "Thank you very much for your kind wishes. I am done with treatments now but experiencing..." + (show)

A close relative went through treatment for this at Mayo several years ago and had the same initial post-op experience as you do with symptoms that escalated after treatment stopped. Several months post op he was eating everything he desired and all of his taste buds operating at 100%. You’ll get there too.

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