NavDX positive test

1235711

Comments

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    Why would Chera be forced out because of NavDX?

  • OhNoItsMe
    OhNoItsMe Member Posts: 21 Member

    i don’t want to mis speak but it had something to do with him having a conflict of interest. He was one of the main ones that developed and sold the rights to Naveris. I know that UNC Drs aren’t supposed to recommend the test unless the patient requests it as well because of it being a conflict of interest. I know there’s more to it and it was told to me but I can’t remember all of the specifics.

    I still love UNC and Dr Chera is the best radiation oncologist in the world in my opinion. Dr Shen would probably be my #2.

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    I think Dr Weiss is also one of the main researchers for the NavDX and has written white papers for them as well. The UNC team seems in general seems to be proud of their involvement in NavDX and take credit with helping with its development. As a research and teaching hospital I would think that this would not be a problem, but what did I know? As an aside, when Dr Chera had to tell me the bad news from my first post treatment scan he was devastated. He’s a caring soul. I always felt like I was in the best hands with my entire UNC team.

  • Greddy100
    Greddy100 Member Posts: 13 Member

    I had a standard tonsillectomy by the small town ENT for biopsy it came back positive SCC T1 P16+. Then 2 months later sept of 2020 had TORS in the big city lol, on the same tonsil bed and a level 4 selective neck 44 nodes all neg. No cancer was found by the TORS despite deep positive margins and signs of lympho-vascular invasion found 2 months earlier at the tonsillectomy. I have had no other treatment and have had 8 NavDx test all neg scores at a 0.

    I was told by my ENT the dividing line between more treatment or not was if clear margins were achieved in the pharynx and that no more then 1 node was positive. I went for it and so far so good fingers crossed, were right at 3 years now. I am more then will to share anything you might want to ask! Good luck.

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Well, congrats, OhNo, for clear NavDX and scoping.

    Yes, prayers for Chill for clear scans and NavDX on Wednesday.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You

    Russ

  • OhNoItsMe
    OhNoItsMe Member Posts: 21 Member

    Im praying you have clear results from your scan today!

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    Thank you. I did indeed have clear results based on the scans today, woohoo! Now I’ll wait for the NavDx results for confirmation.

    Rinse and repeat in 3 months. Life as a survivor, which is a hell of a lot better than life and a victim.

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Congratulations on your clear scans today Chill.

    This is a big deal something to truly celebrate.

    Praise God for his blessings.

    How did your scanxiety go till you got the results?

    This is the best news ever for any cancer patient.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You

    We celebrate----



  • Chillg8r
    Chillg8r Member Posts: 85 Member

    Thank you. I don’t really experience “scanxiety”. I’m really good at staying in the moment and not worrying about things I can’t control. I generally operate with an appreciative view of my life and rarely layer stress onto already difficult situations. Maybe it’s my superpower but my wife wishes I would worry more sometimes! 😂 Controlling how we react to how life is showing up is all we can do sometimes……

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Very well, I am so glad God has so greatly blessed you with a relaxed demeanor and superpower too. Your wife should not want you to worry. I do not worry about things either. I certainly have concerns about my situation but we all know that worry will not change the outcome of anything. Only a plan of action and putting it into motion. I trust in God, I know he has me covered. “Who of you by worrying can add a single hour to your life?” and "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." We can have comfort in times of trouble if we set our minds right and our thoughts in the right place.

    Again I celebrate your clear scans and am thankful you are doing well.

    Take care, God Bless

    Russ

  • OhNoItsMe
    OhNoItsMe Member Posts: 21 Member

    Are you on Facebook? There are cancer groups I’m a member of on there that would love to hear your story.

  • Jill999
    Jill999 Member Posts: 20 Member

    Just had a naves test came back at 4 going in for a scan next week

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Well, Jill999, welcome to the CSN H&N discussion board.

    Sorry you have an elevated test number but hopefully it is not a good reading and there is nothing found.

    Wishing You The Best\

    Take Care, God Bless

    Russ

  • robinsmith046
    robinsmith046 Member Posts: 7 Member

    Hi, all— I’m new here and wondering if I am the only woman on the forum?? I was diagnosed with squamous cell carcinoma base of tongue caused by HPV 16 a few days before Thanksgiving 2023. I have been accepted into a vaccine trial at Mayo Clinic in Rochester and received my first Pembrolizumab infusion and HPV vaccine on 1/9/24. My pre-treatment NavDx was 401. I have another infusion + vaccination set for 1/30/24 followed by surgery on 2/21/24. NavDx tests will be conducted all along the way as part of the trial. I am feeling fine so far and hoping to avoid post-op treatment, but know all the stars will need to align for that to happen. Any advice is welcome. Thanks in advance!

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    Hi Robin,

    I don’t have any advice but I can share with you that you’re on the same immunotherapy protocol that I was on and in slightly less than two years I was declared NED (no evidence of disease), which was not thought to be possible when I started the Trial. It’s now been a year and a half since I’ve had a positive NavDx test!

    while everyone is different I experienced extremely minimal side effects. The worst part of the trial was that they had a hard time jabbing me so I got a port.

    I am thrilled that you are not being asked to get radiation and chemo and are going straight to Pembro, that tells me we are making real scientific progress! Stay positive!

  • robinsmith046
    robinsmith046 Member Posts: 7 Member

    Thanks! I am feeling very positive on the whole and just rolling with this thing. Grateful that I have the time, connections and resources to get the best care in the world at Mayo Clinic. How lucky am I?

  • robinsmith046
    robinsmith046 Member Posts: 7 Member

    My NavDX has decreased each time — latest 197 after first round of immunotherapy plus vaccine. Looking forward to scan and bloodwork on 2/19 prior to surgery on 2/21. Still feeling good!

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    Thats really great! It seems to me that you're responding to the therapy. I too just got another negative NavDx result, I go in every three months now. Thank good ness for these researchers!

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Hello All, I am 27 Months out from 35 Rads and 8 Cetuximab. I was treated for SCC HPV + 16 Tonsil, back of throat and 4 Lymph Nodes in my neck. I have had about 8 NavDx blood tests with all but the last one showing Negative. The last NavDX came back Positive 37. I had a PET Scan last week with everything coming back looking the same compared to the one before. I see my ENT this week for a scope to make sure everything looks okay. My Radiologist said we will check the NavDX in 3 Months. I was of the thinking it was easier to kill something small than it is to wait for it to get larger. It looks like the NavDX test is just giving a wake up call to look closer for something to show up on a scan. I understand if it wasn't for the NavDX test and me being 27 months out, it would mean that my Doctor appointments and scans could be 6-12 months out. What I see now is the NavDX sends up a red flag that something could be wrong. It doesn't mean you will be treated with a positive blood test.