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

Posted by 4dogsrental @4dogsrental, Jan 9, 2025

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.

Profile picture for stephenrfleury @stephenrfleury

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!

Jump to this post

Sorry for my delayed response.
As explained to me, the current science confirms that there is a direct correlation between the number of treatments and amount of gry received and the severity of short and long term side effects.
With each additional treatment, the severity of side effects grows in an exponential way, not a direct correlation.

The side effects and severity of each side effect certainly appear to increase more dramatically as treatments continue to weeks 5, 6, 7. Like a hockey stick graph.

So doctors are trying to cut back on how many weeks of radiation is given and also trying to reduce the amount of radiation given in each treatment.

I hope I am being clear.

REPLY
Profile picture for 4dogsrental @4dogsrental

Part 2.
I am going to now provide my experience receiving treatments in the DART 2.0 Trial Study that I described in Part 1. Obviously, we all have different, sometimes very different, experiences in treatment results based upon too many factors to name here. I pray that many, no all, of you can experience treatments the way that I have. Undoubtedly, it sucks to have to endure this, and it is not easy, but it can be endured.
Listening to our doctors and other specialists in the Mayo staff is a must. Doing all the exercises they recommend is a must. Eating the right foods, drinks, etc. and avoiding foods they recommend be avoided is a must.
Getting your mind and soul in the right place before, during and, I expect, after treatments is a must. Do all these things and you give yourself the greatest chance to kick cancer butt.
Note: drink a lot of water and fluids even before starting treatments is no joke. Continue drinking throughout treatments. Gets tougher and tougher to swallow, even liquids, and by Week 4 it was a one swallow at a time proposition. But I hope you will realize as I did that if you can do the first few swallows something makes the next bunch of swallows a bit easier, then the next few much easier than that; but always still one swallow at a time. There is a reason why we get 2 days of hydration each week when we receive the cisplatin; hydration is super important particularly when you add the impacts of the radiation.
Week 1
5 radiation treatments (each 2 gry)
1 cisplatin chemotherapy session (started at 40 whatever)
2 hydration sessions

My first week of treatments breezed by. My cisplatin treatment took between 4 and 5 hours. First through the IV: saline for an hour. Next, saline joined by a steroid (Dexa-something). Next an anti-nausea drug (long lasting); next anther anti-nausea drug (short term); then the cisplatin; followed by saline again. Done.
Note: protocol gave me 3 days of the Dexa steroid, one dose each day after chemo treatment (each Tuesday) each week. After week 2 it felt to me like being able to take the Dexa was a huge benefit in terms of pain/swallowing. I realized that beginning the day after my third day of Dexa (took Dexa Wednesday, Thursday and Friday) and until I received more Dexa in the IV during chemotherapy treatment, my pain in throat and swallowing steadily increased and then subsided as soon as I got the Dexa in my IV on Tuesday.
Thankfully no nausea and no side effects from chemotherapy.
Weeks 1 through 4, I was basically able to start each day with yogurt, carnation instant breakfast and during the days eat some more yogurt, applesauce, rice pudding, really chewed up chicken, turkey or fish (not much of any of it though, ie, not a full meal) shakes, ice cream. Everything I put in my mouth I chewed up to a creamy soft before attempting to swallow.

Week 2
5 radiation treatments
1 cisplatin chemotherapy treatment (40)
2 hydration sessions

Cisplatin chemotherapy session and radiation sessions once again uneventful. Actually, entire week pretty uneventful.
Started to feel some pain in throat toward end of week. Continued at least 4, often more, gargling sessions with salt/baking soda combo. Noticed some impact from pain on throat/swallowing but not enough to adversely effect eating or require pain relief.
Week 3
1 cisplatin chemotherapy session (30)
5 radiation treatments
2 hydration sessions

During Week 2 and into Week 3, I experienced several episodes of ringing in the ears, a few in left ear and a few in right ear. Told chemo doctor and he reduced dosage of cisplatin from the 40 whatever down to 30. Ringing in ear (tinnitus) is a potential side effect of cisplatin and could become chronic issue. Future cisplatin doses to be only 30.
Pain in throat/mouth much more apparent. Gargling a lot for temporary relief with the salt/baking soda combo. Works well. Doing all exercises, plus some extra ones.
Avoiding extra pain management as I don’t like taking drugs and figured I would benefit most, and feel the benefits of pain relief drugs, if I waited until I really needed them.
Third cisplatin chemo treatment was at reduced dosage (30), as explained above, and at the new dosage, uneventful.
The frequency of being poked for blood tests and poked for chemo treatments and hydration (2 times a week) started to wear upon my arms. In trial, I agreed to submitting to weekly blood draws and some other things apparently not present in the ordinary standard of care protocol. Hence, the arm poking fatigue.
Eat/drink warm fluids and cold stuff (shakes, ice cream, icees, anything; it will give some relief to pain in throat).
Losing ability to taste food and drink. Only could taste prune juice, mushrooms and French fries (tasted the potato).

Jump to this post

@4dogsrental try drinking Boost high protein high calorie. You can only get it on the internet. I survived a long time on that stuff while I basically couldn’t eat due toradiation burns on my tongue

REPLY

I had the exact same problems and now everything is pretty good.

REPLY

It is August 2026. In June 2025 I woke with a sire throat. By July 1 I was diagnosed and scheduled for July 15 surgery for biopsy & "probably" a trach. I woke with a Trach and a conformed Squamous Cell Carcinoma p16+
A few weeks of recovery and consult with Chemo and Radiation, all part of Karmounas Cancer Institute (Michigan). They told me to eat and as soon as I could get food past the trach I ate everything going from 175 to 185. First week of September we had 1x a week Cisplatin, 6 weeks, and 5x a week radiation, 7 weeks. I had nausea hours 30-48 after Cisplatin which took about 5 hours. Radiation caused throat soreness did not impact me until week 5. I slowed down eating considerably and was down to about 160. Finishing week 7 I was wasted, tired and in pain. OXI every 4 hours, mostly sleep and very little eating or drinking. I just forced myself to drink and slurp sloppy eggs. End of week 5 at 160 to 3 weeks after I finished treatments had me down to 130. I slowly began to eat and get off OXI. By January 15 I was pushing 145. A recurring inflamed sore in my hard palate caused enough concern for a biopsy. OUCH it set me back I was down to 120 in 3 weeks. By March I was eating much better and only on OXI to sleep and began to exercise. By end of June I ran 7 miles and was up to 150. Scans are all clear. Keep yourself in good shape, exercise and do what the docs say.

REPLY
Please sign in or register to post a reply.