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

Week 6
5 radiation treatments
Cisplatin chemotherapy session cancelled; blood platelet count, white blood cell count, red blood cell count and other blood chemistry items low due to cisplatin; doc cancelled for this week and said to get rest, drink fluids and eat
1 hydration session

Result from NavDX blood test received on 1/6/2025; test showed more than 97% of the biomarker in blood had been eliminated after first 20 radiation sessions and 4 cisplatin chemotherapy sessions. Since I gave blood for this test, I had received an additional 5 radiation sessions and 1 additional cisplatin chemotherapy session. As explained in Part 1, per the Shands UF trial study this result would be considered a success and treatments could stop. My wife and kids, and I want the risk of recurrence to be 0, for sure, which lead me to complete the 4 additional radiation sessions this week even after I received the good NavDX test result.
I decided to finish out radiation treatments this week to reach a point that I had completed 28 radiation treatments (the number of treatments called for in the Mayo DART 2.0 trial for me) and 5 cisplatin chemotherapy treatments (the sixth cisplatin treatment was cancelled, as explained above.
Throat/swallowing pain noticeably more significant than Week 4 and 5. Began taking Gabapentin once each night in addition to 2 extra strength Tylenol whenever I felt I needed it to address pain. Found Gabapentin to be a big relief during sleep.
Through the entire 6 weeks, nightly visits to the bathroom of at least 3, often more. Due to high volume of fluids consumed. Worth it. The Gabapentin seemed to make it easier to get back to sleep.
The NavDX test result was great, but the biomarker was not 100% eliminated which was the Mayo DART 2.0 trial criteria of “success.” Subsequent review of pictures taken during my radiation session #28 on 1/10/2025 showed tumour in back of tongue virtually gone. Tumour in lymph node in neck largely gone, and I was informed that the lymph node tumours typically take longer to evidence their destruction. At a meeting with doctors on 1/10/2025 we discussed results of treatments to date, long and short term side effects and other pertinent issues. I had received 56 gry of radiation and 5 cisplatin treatments at this time and am aware that the treatments continue to destroy the cancer after the last session has ended.
I asked to terminate the treatments and the doctors agreed to do so. I rang the radiation bell and the chemotherapy bell on 1/10/2025; expressing my heartfelt gratitude for the professionalism, empathy and many kindnesses shared by Mayo doctors, nurses, technicians and staff during my 8 weeks there.

Part 4
Week 7
No radiation, chemotherapy or hydration sessions this week
The pain/swallowing difficulties have increased despite the fact that I have received no more radiation or chemo since last Friday.
I am using salt/baking soda mouthwash a lot for temporary relief. 2 Gabapentin (one before bed) and extra strength Tylenol whenever pain builds up. Swallowing is one at a time and nothing goes down throat without being accompanied by fluids.
My level of fatigue has increased dramatically since the end of treatments. Spending virtually entire day and night sleeping, resting, watching TV, reading with my four dogs nearby. Really too tired to do anything and it is very cold outside. Low chemistry numbers in blood add to my hesitance to go outside or go anywhere. I have been a lump on a log since returning home on Friday, 1/10.
I have done the exercises for jaw, tongue, the “Cs” scream, etc throughout the 7 weeks; often more than the two times a day suggested. I believe this helps, a lot.
I hope that this recitation of my experiences with radiation and cisplatin chemotherapy is of use to anyone. Not sure that it will be, but If it is, I am glad. I kept a rather detailed calendar of everything that transpired during my treatments and found it very useful to look back at the details which otherwise I am sure I would have confused.
This “journey” is one that it sucks to have to take. I pray that I will never experience a recurrence, of course, and I pray that my taste will return; I am a huge foodie. But most of all I thank God for seemingly giving me new lease on life which I intend to use wisely; filling not only my life but the lives of as many people as possible with love and happiness, as God intended.
Final note: I truly long for the day when everyone walking this planet will have access to the care that we on this site are receiving or are about to receive. The thought of anyone not being able to adequately address a cancer within them makes me sick. I think we all can have a role to play in addressing this situation. First thing, by making all aware of this awesome Mayo Clinic.

Hi. I am really bad with typing and with computers and with software!!
I wrote a synpopsis of my experiences with radiation/chemo. The site rejected it twice. I thought maybe its too long so I had to re-type a third time!
this time broke it up to 5 parts I believe. They all posted but I think they may be in different replies and comments in this subject area. My apologies. More importantly, my best wishes to you.

Thank you very much for your kind wishes. I am done with treatments now but experiencing just what everyone said I would. Swallowing/pain has gotten tougher since finishing. Fingers crossed that all resolves in due course and that due course is very short period of time!

@4dogsrental
Thank you so much. I will certainly try.

@4dogsrental, you can see all of your posts in your profile https://connect.mayoclinic.org/member/00-382a30e9e49e1bc9432151/activity/comments/

You can find tips in the Help Center here: https://connect.mayoclinic.org/help-center/

@4dogsrental You have provided others with a detailed description of treatment that will be very informative for many other patients. You have survived the worst parts and now are ready for healing and gradual improvement. I also hope it is a very short period but that may not be realistic. The good thing is that you can look back on your history and see where you were weeks and months ago and it will help you to see how far you have come and all the healing. Best wishes to you, and patience in the healing process. Your new appreciation for life will be a blessing. You are stronger than you know.

So far, my husband’s favorite is Biotene Dry Mouth Oral Rinse. He uses it sporadically during the day but always after brushing his teeth before going to bed.
He, too, had base of tongue hpv-16 sec with a lymph node involvement, stage 1(luckily caught early). It was caught near the end of evaluation for heart and kidney transplant due to a major heart attack. He had 35x of radiation but had 7 rounds of monoclonal antibody therapy, once per week, instead of chemo. This was in the summer of 2022 and he has been clear since then. It did stop the transplant evaluation but he’s doing fairly well, golfing at least once per week and boating. His most annoying side effect has been lack of taste, or rather food having a lack of taste and leaving a bad taste in his mouth.

Thanks very much Sue. Your kind words are very much appreciated. The pain in throat/swallowing has truly ratcheted up this week. I hope my decision to delay taking a bunch of painless to date will pay off cause I am taking them now. Thanks again

@web28
Thank you for your suggestion.
I will certainly try it.
Good luck to your husband. Great news he is clear.
Xo