NavDX positive test

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  • goffrey
    goffrey Member Posts: 56 Member

    I should add so far all of my NavDx tests have been negative but we were discussing the test after I had a negative NavDx test but a PET-CT scan that showed uptake. I asked for a MRI instead of CT since the uptake was near the area I had previously had cancer but the CT part was not reliable due to dental artifact. The MRI showed nothing, scope showed nothing and my doctors went with that coupled with the negative NavDx. That was 9 months ago. I tend to have more faith in NavDx than Pet scans to some degree.

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    Yes, that is exactly what we did. I do think without the NavDx we would not have even been looking in the right place . Liver mets are not the most common site. Good luck to you!

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    I just wanted to post an update to my husband's story to provide a bit of encouragement to others who are battling this monster. My husband had a successful robotically assisted laparoscopic liver resection on April 15th for a single met following a rise in his Nav Dx level from 13 to 74 in a 3-month time period. I am happy to report that the surgery went very well, and the tumor measured only 2.1 cm at the largest point. The tumor margins were clean. He came home in 24 hours and was fully recovered in 10 days, with minimal pain. His Nav Dx score 3 weeks after surgery was ZERO, no cancer DNA detected. The medical oncologist explained treatment options; active surveillance with Nav Dx and scans, or immunotherapy. My husband decided to go with active surveillance, given the sensitivity that the Nav DX test has shown in his case. The oncologist did test for PDL-1 expression and the test was positive, meaning Keytruda could be used in the future should his Nav dx level start to go up. The oncologist felt active surveillance was the best option, since immunotherapy does not come without risks and side effects. He also did genomic testing and found out that down the road he could benefit from a few clinical trials if the cancer returns. If any of you are still questioning the value of Nav Dx testing, I urge you to talk to your physicians about it. I have no doubt it has had a huge positive impact in my husband's case.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    edited May 21 #145

    Thanks for sharing that loghomeliver. I have been told that my surgeon and radiologist don’t use NavDX for surveillance. Does anyone know if I can order the test on my own?

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    Thats great news. I now go every 3 months for labs and a NavDX test and every 6 months for labs, scans and NavDX. FWIW, in case you ever do need to choose immunotherapy, except for Pembro killing my thyroid my experience with a Pembro clinical trial was great with minimal side effects. It allowed my body to kill all of the cancer that had metasticized into my lungs.

  • wbcgaruss
    wbcgaruss Member Posts: 2,460 Member
    edited May 21 #147

    Thank you Loghomeliver for checking back in and sharing your husband"s success with eliminating cancer from his body once more and congrats to you folks for staying strong and vigilant with your husband's case. Above all, I would give a big shout-out to your doctors and care team. I would say their vigilance and sharpness are in the details of their patients including a couple of possible scenarios down the road that may not even occur but they are taking extra steps to prepare for it anyway. They know the meaning of the sooner you get the cancer treated the better and live it in their practice. Besides all that, his doctor also did genomic testing, imagine that. I love all the people who cared for me in my cancer situation and only have the best things to say about them and hold them in high regard. And we have all heard stories and maybe read some on here of scenarios where someone's doctors missed something or were not on top of their game and created issues and even serious consequences. But I must say you folks are sincerely Blessed with a care team and doctors second to none and I would thank God for Blessing you with them as your caregivers in this difficult situation of cancer. Hang on tight and never lose them.

    Also, I was wondering how they found the tumor on your husband's liver, I would imagine it was a scan of some sort possibly a PET Scan, just curious because the NavDX shows presence, now the trick of finding the source.

    With all that said…I Celebrate with you…

    Take Care, God Bless

    Russ

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    I’m not sure if you can order it on your own but you could call NavDX and talk to them about it. Maybe they can talk to your oncologist?

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    You probably cannot order it for yourself. I would call or email Naveris lab at (833)-NAVERIS / (833)-628-3747
    support@naveris.com and talk with them. They might have a physician referral service. Also, I would tell your doctor you want the test, even if they don't routinely order them. If they won't order it, I would seriously consider finding a new physician. I'm not sure where you are located, and they may be the only "game in town", but it is really important in my mind to get the test done.


  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    My husband's thyroid is low from the chemoradiation, and he is already on replacement meds, so no real worries there. I have read your posts and you were the one who actually gave me hpe! To hear that the Pembro worked was great. That may be in the future, so it was good to hear you did so well. If that is in the future for him, it is nice to hear from someone who did fine with the therapy and got good results. Blessings to you.

  • wbcgaruss
    wbcgaruss Member Posts: 2,460 Member

    It would be like any other test your doctor would have to order it. Such as a blood test of any other kind is ordered by your doctor and any scan or test. If you can get any tests done by ordering them yourself it would be required for you to pay, without a doctor's order insurance probably would not pay any of it.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    Yes, we are so blessed to be in Columbus and getting care at The James Cancer hospital. The radiation oncologist is the one who has ordered the Nav Dx every three months and when it increased sharply, he ordered a CT scan of the head and chest. There was something abnormal around the liver, but the report said that it could be artifact. The oncologist wanted to be sure, which led to the PET/CT and then the MRI. I am a retired RN, so I have been reading and studying everything I can. The genomic testing is all brand new, but it is so good to have someone who is on top of it. We know how fortunate we are to be so close to care. I know many people travel a long way just to get care and that is hard when you are in the midst of treatment and not feeling well. Thank you for your words of encouragement. We are trusting God for whatever the future holds and will take it one step at a time. It is so good to have this forum where we can get encouragement and knowledge from those who have 'walked in our shoes".

  • hipchef99
    hipchef99 Member Posts: 23 Member

    UPDATE»»»» From the post I have on March 11. I had my PET scan that didn't really show a lot of difference from the one I had in FEB of this year. I did notice an increase in the SUV level on one of my Lymph Nodes that I had cancer in from the start. The size is the same 0.6cm but the SUV level went from 2.2 to 3.4. This is the first time in 21/2 years that the level went up. A week later I got my report on my NAVDX blood test, about 3 months after the last one that showed positive 39. This one is showing positive 102. I talked with my Radiation team and told them about my thoughts on the increased SUV level on the already treated Lymph Node. They are sending over a request for a biopsy from my ENT that I see next week…….We shall see what the Biopsy brings…..The best to all…..

  • wbcgaruss
    wbcgaruss Member Posts: 2,460 Member

    Well, hipchef99, I am glad your care team is staying on top of this.

    Sorry you are seeing an increase in the SUV level of the lymph node and an increase in your NavDX level but at least these indicators are very small in the body so you are in good shape there, it means you are way ahead of the curve. It seems your docs feel a biopsy is in order and that will show what in going on, a physical sample. So hopefully and prayerfully there are no issues to deal with but as you say "We shall see what the Biopsy brings".

    Wishing You The Very Best

    Take Care God Bless

    Russ

  • robinsmith046
    robinsmith046 Member Posts: 7 Member

    Quick question for hipcheff99: Have you any surgery? Or radiation only?

  • hipchef99
    hipchef99 Member Posts: 23 Member

    Hi Robin, no surgery. My primary was in my Tonsil, back of throat and then traveling to 4 Lymph Nodes. I had 8  Cetuximab and 35 Rads.

  • hipchef99
    hipchef99 Member Posts: 23 Member

    Thanks Russ! I am pushing for something to be done while the tumor is still small. I see my Oncologist in a few weeks along with blood work. If the Biopsy comes up positive in the Lymph Node, I'll see if he wants to do immunotherapy after removing the Lymph Node or Nodes in question.

  • robinsmith046
    robinsmith046 Member Posts: 7 Member

    Thanks for quick reply! I had 10+ lymph nodes removed (only 1 positive) along with a small lesion at base of tongue. This was followed by 20 rads over 2 weeks. Going back for first surveillance on 6/17. The radiation was worse for me than the surgery. Don’t know how all you guys got through 30-35 rads. Hope surgery is an option for you if the biopsy indicates further lymph node involvement. Hang in there!

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    if your doctor think you are a candidate for immunotherapy, perhaps as part of a trial, I would jump at the chance. My radiation and chemo got rid of all the cancer in my throat, but it metastasized to my lung, so I got immunotherapy, and it allowed my body to all the cancer. Just a thought.

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member
    edited June 2 #160

    I wish you the very best in your next steps. You and your care team seem to be on top of things. A NavDX score of 102 is concerning of course, but still low. I am a firm believer that catching this early provides the best outcomes! Prayers for you, stay strong!

  • hipchef99
    hipchef99 Member Posts: 23 Member

    UPDATE!!!!!! I had an appointment with my ENT and told him I had some concerns about my Level 2 Lymph Node SUV going from 2.2 to 3.4. I know there are many reasons why this could happen, but there hasn't been any movement up until the NavDx showed a positive number. My ENT referred me to a ENT surgeon in Spokane,Wa. At this point with nothing showing up on my PET scans I thought I would throw out some ideas and see what the Drs think. The ENT in Spokane did a needle biopsy of my Level 2 Lymph Node. Nothing looked bad, just fluid in the node. The results came back with this Description " The Specimen is composed of extremely rare Lymphocytes and scant acellular debris. Insufficient for specific histopathologic diagnosis"……My question is and I thought I read something on someones post about the NavDX reading HPV dead cells and coming up with a false positive. Does anyone remember anything like that ????????? Thanks and I hope everyone is doing well…….