NavDX positive test

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  • hipchef99
    hipchef99 Member Posts: 24 Member

    Hello John, 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. I agree with you, I don't want to hear in 6 months " Sorry! If we only caught this sooner".......

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Welcome, hipchef99, to the CSN H&N discussion board.

    Once again we have someone showing up with a NavDX test post-treatment showing numbers, so what do we do with it?

    “Tumor cells release DNA just like normal cells so is there a tumor somewhere or are these just errant cells left over?

    The PET scan is clear so we just have signs of cancer on a cellular level no tumors or growth.

    This test is called a monitoring tool so they can see cell levels but can they do anything but monitor a person with the test and as it gets higher, if it does, have a scan every so many months to see if there is a tumor or cancer growth. Until then do they just wait to see where the cancer starts showing?

    I have yet to see of someone getting treatment because of the NavDX test so does it happen, can they treat you with cancer drugs or immunotherapy based on the level of cancer cells in your body? If you have received treatment please add in here.

    I found a good article explaining NavDX and it says...

    “When a cancer cell dies, the cancer degrades its DNA into fragments that get released into the bloodstream. This test can distinguish HPV DNA that’s from cancer cells as opposed to HPV DNA from non-cancerous cells.

    Here is the article...


    So hipchef is what they are seeing just dead cancer cells leftover from your treatment?

    I am still not completely sold on this test and exactly what can be done if the results show a cancer presence but I will research a bit.

    So hipchef the test tells you they found cancer at a cellular level, stick with your care team and ask them what's next and can it be treated at the cellular level or must you wait till they see a tumor or growth on the scan and get it then which of course would still be really small.

    Also here is a video that may shed some light on it...

    Case Study: Identifying Molecular Residual Disease - Dr. Glenn Hanna


    Wishing You the Best

    Take care, God Bless

    Russ


    Also, I recommend you check out the "Superthread" at the top of the Head and Neck page, it is loaded with info and links that you may find helpful.

  • steven59
    steven59 Member Posts: 102 Member
    edited March 11 #104

    My Dr said to me he could give me the navdx but wouldn't know what to do with the results. Northwestern medicine is rated pretty high and one of the few clinics that has proton machines yet seem to have no alternative treatment if hpv+ comes back.

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Thank you for the reply. I have given my positive NavDX a lot of thought. What I came up with now for me is. I went from NED to a watchful waiting. At 27 Months out all of my Doctor visits and scans would be 6 months out. The NavDX positive brings the discussion back to the table with having the NavDX repeat in three months from the last test. We will also repeat the PET scan after the next NavDX test. I figure Blood work would also come into it soon. My ENT who was now out 6months will probably go back to three months. I see my ENT this week. Right now with the conversations I've had with my team is, let do more tests and wait until it shows up. My question to my Oncologist will be, why not start Immunotherapy now when the cancer is small.......

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Steven, I am convinced that the test can indicate cancer cells but as in your case I don't see the doctors actively doing anything.

    I would say it is a good indicator that something is going on but it seems until the area giving off the signals gets large enough to show on a PET scan and be operable or treated with conventional therapies it seems there is not much they can do.

    So it seems it is more of a monitoring indicator tool.

    More Research

    Take care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    I understand where you are at with this situation hipchef.

    I am foreseeing a pushback by the insurance companies on PET Scans if NavDX gives an indicator and they want people to get a PET every 3 months

    We shall see.

    Take care, God Bless

    Russ

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Russ, I have a PET scheduled for May. This will be my 9th one. I understand that insurance may be a problem covering PET scans because of a NavDx detection. The test is still in trial. I like the PET because it shows SUV numbers for activity. I still have some SUV numbers hooked up on some Lymph Nodes that haven't changed. We shall see, I'll let you know when I do.......Thanks for the help.........Bill

  • Jill999
    Jill999 Member Posts: 20 Member

    My navdex was 4 I have two spots on my lungs pal combined score zero so immotherpy not going to work plus 0 mutations so I’m just going to refuse treatments I’m thinking about three months left

  • Jill999
    Jill999 Member Posts: 20 Member

    pdl Score

  • Jill999
    Jill999 Member Posts: 20 Member

    I was 30 months when it came back wondering why they even bother to check if there is nothing they can do when it does Mary if it’s local it’s different every test was worst case scenario so I’m just going to stop

  • Jill999
    Jill999 Member Posts: 20 Member

    Not worth the extra time if I’m going to be sick the whole time

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Jill I don't know your case and you don't say anything about it except for the spots on your lungs. Could you give us some details and don't just give up on treatment? My sister had a nodule in her lung and they got rid of that with a minimum number of treatments from the CyberKnife. A very much more localized type of radiation. Also if you are near a facility that has a Proton Machine they can really pinpoint your cancer treatment. Please give us a overview of your case and at what point you are now someone may have some insight to help you.

    Also, I recommend you check out the "Superthread" at the top of the Head and Neck page, it is loaded with info and links that you may find helpful.

    https://csn.cancer.org/discussion/261072/superthread-read-only-contributed-by-sweetblood22#latest


    NEGU (Never Ever Give Up)


    Wishing You the Best

    Take care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Very well, Bill, I wasn't referring to your case in particular but referring to cases in general. If NavDX requires a lot of PET Scans in conjunction for it to be used properly I was thinking of it being widely used and the insurance balking at the sheer numbers of that increase across the country. We shall see.

    Thanks for keeping us updated.

    Take care, God Bless

    Russ

  • Jill999
    Jill999 Member Posts: 20 Member

    metastaitic to my lungs the biopsy showed combined pdl score zero so not good for immunotherapy many cdk 4/6 amplification cyclin d1

  • Jill999
    Jill999 Member Posts: 20 Member

    Just not much can be done if immunotherapy won’t work and it’s all based on pdl1 metastatic head and neck is not good only 6 to 15 month survival

  • Jill999
    Jill999 Member Posts: 20 Member

    Cdk 4/6 might be helpful that is a pill that is taken for 21 days and 7 off most of the time will find out what the doc has to say but not going to do chemotherapy not worth it to just be sick the whole time

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Very well Jill I am sorry you have a less-than-stellar prognosis. I hope they can come up with something for you. You sound very well-schooled in medical issues and medications, sounds like you can tell the doctors a thing or two.

    Wishing You the Best

    Take care, God Bless

    Russ

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    This may be a dumb question but have you looked to see if there any keytruda trials for folks who’ve had HOV cancer return? I was on a trial that combined Pembro with an element of the HOV vaccine and it was very effective.

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    I don’t understand much of what you’re saying here but I do know that I had a couple of NavDX scores of 0 and then it came back as a 4. I was still in treatment so I kept going. Since then I’ve had another 5 scores of 0. I bring this up only to say that when I called Naveris and spoke with a high level guy there he told me that 4 is an inconclusive score and and could very well be a false positive result.

    I don’t know if that information is helpful or not, I wish you the very best. You sound very plugged in and seem to know way more than I do.

  • Jill999
    Jill999 Member Posts: 20 Member

    I’m getting into a study that enhances immunotherapy for people with low pdl one test was 0 and a different lab was 10 so now they are having a third lab test the same biopsy