Cancer Free After Radiation and Chemo DART 2.0 Trial

Posted by 4dogsrental @4dogsrental, Jan 20 9:28pm

I wish to say first that I pray that each of you reading this will one day be able to say, “I am Cancer free!”

I am Cancer free!

After 28 radiation treatments (2 gry each) and 5 chemo treatments (cisplatin), my doctor called me today to inform me that the biomarker used to monitor my HPV-16 Back of Tongue Cancer is at 0! The NavDX test used to measure the biomarker in our blood has been a Godsend to me. Biomarker started at almost 13,000; went down to 365 after four weeks of treatment; and now is at 0!!!!

I have provided on this site a week by week/play by play discussion of my Cancer experience at Mayo Clinic. I terminated my treatments in the DART 2.0 Trial on January 10, 2025; ahead of protocol but based upon a wealth of knowledge shared with me by my Mayo doctors and Staff.
It took until today, to get the news that I had made the right decision to terminate treatment on January 10, 2025; thank you God.

The throat/swallowing pain has been increasing since I terminated treatment, to a level which required that my Gabapentin prescription be supplemented with a Hydrocodone/Tylenol drug. Pain now manageable.

I am so, so thankful to everyone at Mayo Clinic. I will be returning for follow ups in due course to satisfy the trial requirements; and I look forward to providing all that I can to assist in the trial’s success. 28 radiation treatments over 5 1/2 weeks with 56 gry and only 5 chemo treatments to eliminate the Cancer — a case that I hope will assist future patients in my shoes to reduce their treatments and thus reduce the extent of their short and long term side effects — the sole purpose of the trial.
My best wishes and prayers for all of you will continue, now and forever.
My best,
Brian

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

Colleen Young, Connect Director | @colleenyoung | Feb 1 8:05pm

This is great news, @4dogsrental. I'm also posting your previous discussion journaling your story:
- New HPV-16 back of tongue cancer diagnosis and treatment to date https://connect.mayoclinic.org/discussion/new-hpv-16-back-of-tongue-cancer-diagnosis-and-treatment-to-date/

I'm sure @jano @sepdvm @calenbd @lilypilly and others will appreciate reading this update. I look forward to your future posts to support new members.

How often will you have follow-up appointments?

Jano | @jano | Feb 1 9:30pm

Great news bud! Continued success and best wishes. I had radiation and chemo back in 2015 and 2016. Cancer free for the past eight years. Blessed! wishing everyone in this group and other Cancer groups, success and prayers. Stay well. 😉

4dogsrental | @4dogsrental | Feb 2 9:12am

In reply to @colleenyoung "This is great news, @4dogsrental. I'm also posting your previous discussion journaling your story: - New..." + (show)

Thank you. I will be going back for follow up every 3 months for a couple of years, then semi-annually for another 2 years then annual check up.
I let my guard down and caught a cold/cough that has hit me pretty hard this past week.
I learned a lesson: not to push too fast to get back out there in public. Only took one visit of a couple of hours to a family member’s house to catch something.

I will be glad to keep this site updated. My best wishes to all.

Julie H | @jkhagen1 | Feb 7 9:23am

This is amazing news! I am grateful that you've shared so much of your journey (SO helpful to be able to see around the corners). All the best as your body continues to heal. I pray you will continue to be gentle on yourself and that your life post-cancer is filled with good things.

4dogsrental | @4dogsrental | Feb 27 8:11am

Thank you to all of you well wishers! I am about 6 weeks since last radiation treatment. First 3 weeks got progressively difficult; both eating and drinking.
Lost another 10 pounds or more (in total, down from 205 when began treatments to 174). Then things started to relieve. Now can swallow fine; both eating and drinking. Put 12 pounds back on. Up to 187.
Still not tasting much though of fluids or food. Hoping taste will return soon as I am a real foodie. 🙏🙏🙏🤞🤞🤞
First follow up visit to Mayo next week to see a hearing doctor. Had some tinnitus due to Cisplatin during treatments. Reduced dosage and # of treatments. Will get ear doctor’s assessment.
My best to you all.

Colleen Young, Connect Director | @colleenyoung | Mar 9 4:06pm

In reply to @4dogsrental "Thank you to all of you well wishers! I am about 6 weeks since last radiation..." + (show)

@4dogsrental, any update from your latest visit with the hearing doctor? Was it an appointment with an audiologist?

cwanczyk | @cwanczyk | Apr 12 10:53am

In reply to @4dogsrental "Thank you to all of you well wishers! I am about 6 weeks since last radiation..." + (show)

Hello 4dogsrental, I am at Mayo in Jacksonville under ents care. I was wondering if I was aloud to ask what doctor you had to treat your tongue cancer. If you recommend a specific one, I am seeing one now and may be looking for 2nd opinion without mayo. I have moderate tongue dysplasia and it was removed but now showing in different areas and painful. I had to push for biopsy which found this. Just want to get another doctors take on this situation which is overwhelming to me. But I still want the care of the ccc of mayo. So glad you received good care and are coming through this. You are very strong.
Thank you,
Christine

4dogsrental | @4dogsrental | Aug 12 10:24am

Sorry it has been a while since I have posted my progress. Have now had two quarterly follow up visits to Mayo.
The PET scan and CT scans as well as the NavDX blood tests all show no cancer any more!
I continue to have little in the way of taste. Taste some chocolates (thank God), pickles, sweet potatoes, some spices, mustard, ketchup, some dressings, shrimp (sometimes?), and even taste more things, at first, but then lose the taste as I eat more. Hopefully the slow progress toward tasting more things is indicative that I will regain all taste over time! I am a foodie so I sure hope so.
I did develop lymphedema (swelling from fluid collection) in my neck, but was given a compression gizmo to wear at night and did some physical therapy to learn how to address it; and they are working to date.
Bottom line: 6 months out and I feel like I have 100% of my energy back. Only effects that remain are limited taste and having to stay on top of lymphedema. Truly feel blessed; and remain truly thankful for Dr Holtzman and entire Mayo team.

4dogsrental | @4dogsrental | Aug 12 10:29am

Further note. Since my diagnosis in October/November last year, I have discussed my diagnosis and treatment with 3 men, ages between 48 and 80, who have the same back of tongue squamous cell carcinoma. One finished a pretty tough go around of treatment; but successful. Another, in his 80s, also had some difficulties but beat the cancer; and a third who I just spoke to this week, 48, and starting treatment this coming week.
This type of cancer, HPV-16 back of tongue squamous cell carcinoma, does not appear to be rare any longer.
My love and best wishes to all.

4dogsrental | @4dogsrental | Aug 12 10:41am

In reply to @cwanczyk "Hello 4dogsrental, I am at Mayo in Jacksonville under ents care. I was wondering if I..." + (show)

Hi Christine. I am so sorry that I did not get on this site for so long and thus missed your message. My cancer doctor at Mayo was Dr Holtzman, who I recommend in so many ways and for many reasons, not the least of which is that he made it very clear that his sole focus was on me, the human being, and not any other goal or factor unrelated to my well- being.
I know it’s too late to do you any good now, but I sincerely hope you found your way to Dr Holtzman or another doctor just like him.
Keeping you in my prayers.

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