NavDX positive test

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  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    Hipchef, you may be right on that posting I can't recall it exactly.

    So your SUV is up on the last PET Scan and NavDx is showing a positive number.

    Both these tests showing an increase in number, what does it mean?

    I am not sure except the NavDx number may indicate something I would say it is just the precursor to finding an actual cancer or tumor. I guess the NavDx test is good to say hey let's keep our eyes open there could be cancer somewhere in the future or should I say a cancer that can be identified in a place and biopsied and treated either by surgery, radiation, or chemotherapy or multiples of each. So far what I understand about the NavDX test is that it is not a test to detect your original cancer but is used mainly post-treatment for recurrence monitoring and prevention. Although I think anyone could be tested to see if it shows anything but I doubt insurance would pay for it just as a exam screening or health exam test.

    As far as false positives I think they are possible on NavDx and SUV. I sort of remember a post where someone had a NavDx test that had a reading and one later that did not but maybe one later that had a reading again.

    Ideally, if something like this blood test to find an early detection of cancer in our bloodstream could be used in say a yearly checkup, and if they would be able to administer some sort of medication in the blood such as chemotherapy or immunotherapy and eliminate cancer at such a low level would be the ideal situation and I think that this is where this technology is going in the future but as of now cannot be done.

    At this point, they still have to find the actual cancer and treat it which requires it to be big enough to be found by scans that can be used such as CT and PET scans.

    Hipchef why did your ENT send you to another ENT was it for a second opinion?

    If the lymph node they are biopsying is questionable at all why don't they take it out?

    Wishing You The Best

    Take Care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    By the way, Hipchef here is a good info site on SUV info…

    And this site provides great coverage of NavDx testing…

    Take Care, God Bless

    Russ

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Hi Russ, thanks for taking the time to respond. I have had 8 PET scans and 2 CT's in the last 2.5 years. I watch the Lymph Node size and SUV numbers. The one Lymph Node, Level 2 SUV numbers have even gone down slightly every 3 months. The Size has also gone down slightly over that same time. When my NavDX blood test became Positive in Feb of this year, the SUV went up slightly. Nothing to be alarmed about. The size also went from 0.9 cm to 0.6cm. The next NavDX three months later showed the positive number went up from 39 to 102. My PET showed the Node stayed at 0.6 cm but the SUV went from 2.2 to 3.4. I brought this up to my ENT because nothing else was out of line on the PET scan. I started the conversation about the SUV because I figure it would be easier to take care of the cancer while it small rather than waiting for it to be seen on a PET or CT. My ENT told be he may not be able to do a needle biopsy because the node is so small.

    Fast forward a few weeks, I traveled to Spokane to see an ENT that does a lot of surgery's on head and neck cancer patients. I talked with him about getting the conversation started incase surgery maybe needed. He told me he may be able to get a biopsy and asked me if I was game. I sad lets do it and we walked down the hall and got it done. I posted the results in the upper post. The new ENT will be talking about this with the tumor board next Wednesday. It should be interesting what they come up with. I also see my Oncologist on Tuesday, he may have other ideas. The problem all of these Drs have, is they can't see the tumor. I think they feel they are shooting in the dark. I get another NavDX around the second week of August and another PET scan around the 20th……….Take care……..Bill

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    OK, Chef thanks for all the extra info.

    Wow 8 PET scans, did your insurance balk at that? That's a lot of PET scans in 2 years.

    All I can say is you have had plenty of scans and plenty of tests and seen plenty of doctors and I believe you have it pretty well covered and you can feel confident that you have nothing significant going on at this time or surely someone or some test would have caught it.

    Your saga continues.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    It sounds like you are in the same position that my husband was a few months ago. His Nav DX was increasing, but they couldn't locate the tumor. They were looking in the wrong place! Head and Neck cancer often spreads to the lungs and my also recure in the head and neck, so those are the areas that they scan. However, in reading the literature from Navaris lab (who make Nav DX). They are finding other areas of spread, such as the liver, femur, etc. Those areas are not routinely checked, so it often is missed. My husband's PET/CT identified a suspicious area and the MRI confirmed the tumor. But until that happened we were in the waiting game too! His NavDX was rising, but they couldn't find the tumor. Fortunately it showed up eventually and was really small, so I hope that will be the same for you. I am glad your team and you are on top of things. I will be praying for you and your team of doctors.

  • hipchef99
    hipchef99 Member Posts: 24 Member

    I remember when you posted about your husbands tumor showing up on his Liver. After reading that I figured it's not just a watch and wait for the head and neck area. The CT can pick up smaller tumors than a PET. I'm thinking of asking for both. I'll post in a few weeks after my NavDX test and Scans are finished. Thanks for responding and the prayers……..Bill

  • hipchef99
    hipchef99 Member Posts: 24 Member

    No problem with balking on my requests for any scans or treatments. I depend on my Drs to make the case for way it s/b done. Take care!

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    is there any conversation with your doctors about immunotherapy either as std of care or perhaps as part of a trial? I realize that it may be that with no “solid” (pun intended) evidence of recurrence there may not be any SOC or trial options but your situation is exactly why I love the concept of immunotherapy over surgery and radiation. Those effen cancer cells are sneaky little bastards but while they can hide from a scan they can’t hide from your immune system once their camouflage is stripped away by a Pembro cocktail.
    Surgery can become a game of whack a mole…..

  • hipchef99
    hipchef99 Member Posts: 24 Member

    When my NavDX was in the 30's I asked my Oncologist if he could treat it with immunotherapy. I also asked him if he would treat the cancer with immunotherapy any differently at this point then he would after it shows up on a PET or CT scan. His answer was that he would do the same treatment . That tells you "seeing is believing" at this point of using the NavDX blood test as an early detecting tool and treating the tumor at a real early stage. IMHO, I would like to start immunotherapy to kill the cancer cells at this point before they sneak in every nook and cranny of my body. My Surgeon told me he just started really hearing about the NavDX blood test about a year ago. He then looked at my chart and saw I was doing the test for the last 2 1/2 years. There are still many Drs that don't know anything about the test or what to do with the results of a positive number. The only good thing the test did for me is to bring all my Drs, scans and blood test back into a 3 Month time frame. In many cases and with me being 2 1/2 years out of treatment I may be out 6-12 Months with seeing Drs or getting scans. At least this is keeping everything back on the burner……..Thanks for responding……….Bill

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    I completely agree that if the only benefit at this point for the NavDx result is the early warning then that is well worth it.

    Perhaps you could call Naveris yourself to see if they know about any trials for folks in your situation? I’ve called them on 3 occasions with questions about my results and was easily able to speak with the doctors there who are involved in the research. I know that IF there was anyone offering a Pembro cocktail to people in your situation I’d jump on it. It’s a long shot but may be worth a phone call.

    My metastasized cancer was supposedly incurable but Pembro with the HPV vaccine element added exposed it all to my immune system which did its job! They told me that I.T. was my only option because radiation or surgery was just playing “whack a mole as I mentioned above.

    I too asked my doctor if, in retrospect, we could’ve just used it instead of the 37 days of radiation and weekly chemo and he also said that “at this point” he would not change the treatment. He also implied that he was hoping that someday there would be enough data to support just going with Immunotherapy. My takeaway was that just going straight to I.T. might’ve done the job but it was too risky at that point to go there and risk letting the cancer get out of control….but I’m just “a guy in a diner“ talking about his cancer experience. I have no special knowledge or expertise.

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Thanks for being the guy in the dinner. I'm the guy walking by your table seeing what you ordered to see if it will fit the bill for my growling stomach.

    I did talk with one of the Drs on staff with Naveris when my NavDX was 37. I think I will make another call to them on Monday. I see my Oncologist on Tuesday. I'm also talking with my ENT surgeon on Wednesday after he meets with the Tumor board. That could be an interesting conversation. I feel doing surgery and removing my Lymph Nodes at this point could be like "Wack a Mole". It could be in my system and show up in my Lungs, Liver or where ever. I'll bring up the extremely rare Lymphocytes with my Oncologist…….Thanks again for the help……….Bill

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    I believe the NavDx test helps for now and may have a future that is better if they can come up with a treatment option once they get a reading with it from your blood sample.

    For now, it's, hey we got a reading, ok it's going higher, lower, still scanning and waiting for a tumor to show up.

    Certainly a stress on the patient, hey we know you have active cancer but we can't find it right now till it gets bigger.

    As was said some doctors have not heard of the test and even though many people on here have heard of it because of the postings generally it still needs time to come into it's own and be widely recognized as a good tool or an excellent tool if a treatment protocol can be established short of scanning and waiting for a tumor to show.

    Right now the NavDx is up and coming but there is always research going on so I am no discounting other possibilities in the future of something even better than the NavDx, but who knows?

    It's also not fun getting PET scans and having radioactive dye put in you more than necessary.

    But I thank and praise Almighty God that we do live in a time where he has greatly Blessed us with the many refined treatments that have been honed to a very fine edge in this day and age such as refined surgery with even robotic surgery, who woulda thought. And radiation that is so refined from study and experience and development of new machines it is amazing. Think about it radiation was first discovered and used in it's limited fashion at that time in 1896. And it was in the 1920's it was better understood…

    New radioactive isotopes, type of rays and radiation techniques were discovered. Scientists began to understand the nature of radiations, their modalities of actions and the relationship between time and dose of radiations on cell survival. Nevertheless, it was only by 1920s, that physicians understood how the administration of the total radiation dose in fractionated ones was better than a singular treatment session, regarding cancers control and fewer side effects

    Great history record here if you want the whole story…

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5535674/

    And the Blessings of Advanced Chemotherapy, or should I say the blessings/cursings because even though it eradicates cancer it can have some terrible side effects. Chemotherapy I see was first used on a patient who was having trouble breathing because of
    a large tumor mass in their neck.
    The Year—-1943

    So we are Blessed with much development and trial to what treatment is refined today with 100 years of radiation development and 80 years of chemotherapy development.
    Imagine getting treated 50 years ago, what they must have gone through.

    But you know back then it was not rads and chemo for H&N patients, many times it was disfiguring and debilitating surgery.

    Have a great day everyone.

    Take Care, God Bless,

    Russ

    (NEGU) Never Ever Give Up

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Going back in the day, Nov 1971. I got a call from my Moms Surgeon after her surgery. The Surgeon said she had cancer in her liver and there is nothing we could do, She has about six months to live. If we only caught it sooner the surgeon said……

    I think it's things like that that makes a person think. When I go to each of my Drs I feel like we talk about the Elephant in the room, but do nothing about it. In every case the Dr says, Okay will see you in three months. I think they worry about doing something that to invasive and hurts the patient rather than helping the cause. In my case, I will be asking the question, is there a less invasive method we can try that may kill the cancer cells before they get larger. Also in my case, we don't even know if these HPV cancer cells are even forming a tumor. A lot of questions with not many answers………Bill

  • hipchef99
    hipchef99 Member Posts: 24 Member

    Hello all, I hope everyone is doing fine. (UPDATE)…….After two positive NavDX blood tests of 37 and three months later increasing to 102, I got another PET scan yesterday. The last two PET scans didn't show anything new. The one yesterday showed " New 1.1 cm nodule in the anterior left lung base 4/147, SUV 7.5… I am waiting for the NavDX to come back, but these results snow that the NavDX blood test did it's job in catching the reoccurrence about 6 Months before the PET scan could. Now I can catch up with my Oncologist and Radiation team…..

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member

    Well, very good hipchef I am so glad it worked out for you.

    Hopefully, they can remove or radiate this nodule to eliminate it and your next NavDx test will be zero, congrats for having a good medical team.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • psaund9860
    psaund9860 Member Posts: 5 Member

    I am in the same situation. HAD several PET and NAV DX negative results then the recent NAV DX was positive. Doctor is perplexed

  • Chillg8r
    Chillg8r Member Posts: 85 Member

    do you mind sharing your recent positive score? Was it very low?

  • psaund9860
    psaund9860 Member Posts: 5 Member

    It is 69

  • hipchef99
    hipchef99 Member Posts: 24 Member

    My NavDX turned positive in Feb. The number was 37, PET was fine….In May the NavDX was 102 and the PET was fine. In Aug the NavDX is 210 and the PET is showing a 1.1 cm nodule in the anterior left lung base, SUV 7.5………What was your NavDX number ????? Show your DR this report. It took over 7 months to show up on my PET scan……Take care….Bill

  • psaund9860
    psaund9860 Member Posts: 5 Member

    How are you doing now. How old are you. I'm 72 and was in good shape. Now this cancer occupies my day, 24 hours a day.

    I was at Moffitt for 6 weeks and was told I was cleared of cancer. Now it's back. I found a doctor locally who specializes in HPV CANCER of the head and neck.