NAV Test moving upward after treatments not down

BuckeyeRich
BuckeyeRich Member Posts: 1 Member
edited June 2023 in Head and Neck Cancer #1

I had a biopsy of my lymph nodes and which showed the presence of squamous cells. I then had a NAV Blood Test that was positive prior to any surgery, or treatment. Immediately following the pre-treatment NAV Blood test, I had a tonsilectomy of my right tonsil, eight weeks of radiation, and the same for Chemotherapy. I then had a PET scan three months after my last therapy session, and now three months after that had a CT Scan and MRI. Nothing really presented on any of the radiologic studies or the two physical scopes of my neck area that I had post op. I was told that I was doing well and everything looked good. I just took a NAV Blood Test and the test showed that I was positive and the figures were almost two times higher than the first test. How can you have all the treatments, surgery, and more with negative results and now the NAV Test shows a market increase.

I don't get it and question the validity of the test. Help me out. With these parameters, what should be the treatment plan for me?

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member

    Well Buckeye, welcome to the CSN H&N forum. This subject can take a lot of time to go over but I will try to simplify as much as possible. Partly because it can involve a lot of material and partly because I am not well versed in it but willing to learn.

    The NavDX test is fairly new within the last several years I would say and reading about it on the net there does not seem to be any negative reviews or ideas so I think it is an accepted test and is accurate. It seems like a great concept to find DNA of HPV-related cancer at such a tiny level. But once they see it with this test does it mean there is cancer in the blood or just the possibility of it developing into cancer I am not sure. My question is can they use immunotherapy to eradicate it in the bloodstream before it becomes cancer or does it just give a good indication of the possibility of cancer showing up somewhere in the head and neck area and they will do Cat Scans more often?

    I, among many older folks on here never had the test we just got our treatments and followed up with scans. I have had cancer 3 times but to this day I follow up with a CT Scan of the head and neck and a chest scan once a year. And since my last cancer in 2019 and the complications I had I see my ENT every 6 months.

    If I were you I would feel comfortable that you went through the brutal treatment and your cancer is eradicated as indicated by the continued clear scans.

    I think if you are concerned by this I would get back to your doctors, thats where you need to go and ask them to explain how all this works to you as per the test. I would search the net and read up on it and write all your questions down so you don't forget any. Could there or should there be anything done now or be satisfied with the clear scans? It is great to see down to the micro level but then what do you do some kind of chemo till the number is 0 or do you wait to see if the cancer shows again by monitoring with scans? is there a treatment or do you wait till the cancer starts somewhere and gets big enough to show on a scan? Also even if there are DNA traces in your bloodstream what are the chances it would turn into cancer somewhere?

    Also, you always have the option of a second opinion on your case.

    Again I think you can personally feel comfortable that your cancer is gone because of doctor follow-ups and the clear scans you are getting, that's what has been done in the past. Meanwhile, if you feel the need to investigate this more and the more knowledge you have the better.

    Here is a link to look at if you don't mind technical reports--

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9955790/

    At the end of this evaluation, it says--

    5. Conclusions

    While clinical validation for NavDx has been well documented in the literature [34,35,36,37,38,39,40,41,42] (see Appendix C), the analytical validity of the NavDx test has not previously been presented outside of the materials provided to the CLIA and accrediting bodies. Here, we have provided analytical validation for NavDx including a thorough investigation of the stability of whole blood samples up to seven days, high specificity given the results of the low values of LOBs, and high sensitivity shown by similarly low LOQs and LODs. Analyses also showed good accuracy and precision, both intra- and inter-assay, and excellent linearity. These studies demonstrate the reliability of NavDx as a laboratory-based assay for use in detecting circulating fragments of TTMV-HPV DNA from five high risk HPV subtypes commonly found in HPV-driven cancers.


    Take Care, God Bless-Russ

  • LuvnTN
    LuvnTN Member Posts: 75 Member

    You can go back and review some of the earlier NavDX test discussions... however, I had a similar experience as you. I had just finished my one-year-post-treatment ENT follow-up.. and was given the unofficial "all-clear" pending results of the Nav test. The Nav test came back positive. To make a long story short, what was discovered (after multiple CT's, MRI and eventual PET scan) was that there was a distant metastases on my 5th rib bone that was missed by all. It turned out that the rib met was actually on my pre-surgery/treatment PET (however, it was very faint due to the poor quality of the scan readings). So, they can treat your head and neck, and it can all look good and NED to the ENT (because he/she is only checking your head and neck); however, the NavDX is an indication that there is something, somewhere shedding the virus dna that is getting picked up by the blood test. Having gone through 4 Nav tests, I honestly trust the blood test as an indicator of disease much more than any scan or physical exam.

  • LuvnTN
    LuvnTN Member Posts: 75 Member

    Your care team can't really do much until they can determine where the cancer is that is giving a "positive" blood test. There are recent posts here from "chillg8r" you should look up.. he had a met to his lung, and participated in a trial with regular injections of Keytruda (including some of the HPV vaccine in the first few infusions). He has successfully logged three, consecutive "negative" Nav tests.

    In my case, because they located it on my rib bone, the treatment was for addition spot treatment with radiation. I am actually going in this afternoon for my scans to check on the results from that treatment. I will have the follow-up on Wednesday along with another NavDX blood draw. At this time, I won't really feel confident with any news the oncologist provides at the follow-up until it can be confirmed by the Nav test results (which usually take 1-2 weeks to get back).

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member

    Also since yesterday after doing research on the NavDX test found another blood test to locate and define cancer to the specific organ or area of the body called the Galleri Blood Test. It was in testing and very promising. You may want to ask your doctor if they know anything about it or use it and the availability of it. Just something else to consider. I made a posting about it if you want to check it out--


    Wishing You the Best

    Take Care, God Bless-Russ

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    Hello fellow Buckeye!

    Let me share a post with you about my husband's journey. He is being treated in Columbus at The James. Sorry this post is a bit lengthy.

    • My husband was diagnosed with HPV positive BOT tumor in Feb. 2022. He completed 33 chemoradiation treatments in May 2022. He had NED until August 2023, when his NavDx level rose from 0 to 4. He had multiple scans. PET/CT and CT with and without contrast between August 2023 and Feb. 2024, with NED. His NavDX score increased from 4 to 13 and held steady until Feb. 2024 when it rose to 74. In March he had a positive PT/CT scan and MRI that showed a tumor on his liver less than 2 cm. He is scheduled for Robotic Assisted Minimally Invasive Laparoscopic Surgery in early April. The surgeon says because his tumor is so small, and in a location where it is easily removed, the surgery could be curative and no further treatment may be needed. Needless to say, based on our experience, we believe that the NavDX can lead to early detection and treatment of metastasis or recurrence and has the potential to save lives.
    • I post this as an encouragement to others that the NavDX test can be trusted. Yes, it was frustrating to have a positive test 15 months after treatment, and yes it was frustrating to not know where the tumor was growing for almost 6 months! Yes, we did ask the doctor why didn't you start immunotherapy when the NavDX went to 13. The short answer is that the clinical trial have not yet been done to determine if the risk of treating according to the NavDX number is worth the benefit. I am just thankful that we have a test that tells us to keep looking for the source! According to what I read most tumors don't even show up on CT scan until they reach 3 cm. The PET/CT my husband had in August was negative. When he finally had a positive PET/CT 6 months later the tumor was less than 2 cm. The protocol for followup would have not included a PET/CT, only scopes and CT scans. Because of the elevated NavDX test, the doctors kept looking and kept scanning. There are no clinical practice guidelines yet for what to do with a positive NavDX after treatment. Actually, doing monitoring with NavDX is not even a practice guideline. This letter to the editor in the Oral Oncology journal, explains it better than I can. "The use of plasma circulating tumor DNA in the early detection of oligometastastic disease in the detection of HPV positive oropharngeal squamous cell carcinoma". You can request the article with the case study from PubMed. Just google the name of the article and it will bring up the page where you can make the request. I got the article in 24 hours.
    • We are people of faith and are trusting God for healing for my husband. We know that God works through our dedicated physicians and scientists and are grateful every day for the advances in the treatment of this disease. We pray for each of you who are in your own battle, for healing, strength and comfort.

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  • goffrey
    goffrey Member Posts: 57 Member

    If your NavDx test came back that high there is something brewing somewhere. I would speak with your medical team about getting scans every 3 months until they can locate where it is at.

  • Loghomeliver
    Loghomeliver Member Posts: 19 Member

    I agree with Goffrey. Unfortunately, the usual follow up involves only scans of the chest and head and neck and scopes. However, in my husband's case, the tumor was too small to be detected by CT and was in his liver. His tumor was found on the 2nd PET/CT 6 months after a negative PET/CT and was then confirmed with an MRI. The tumor was in his liver not his chest or head and neck. How long has it been since you had a PET/CT? If it has been more than 6 months, I would ask for another PET/CT