NavDX positive test

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

    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: 23 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: 2,447 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: 2,447 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: 23 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: 2,447 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: 2,447 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: 2,447 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

  • wbcgaruss
    wbcgaruss Member Posts: 2,447 Member

    That's good news Jill there is always hope it seems if we look in the right place.

    I pray this study will be just the right thing for you and that God will Bless you with healing.

    Our Motto On Here is NEGU (Never Ever Give Up)

    Wishing You The Best

    Take Care, God Bless

    Russ