NavDX positive test
Comments
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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
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Actually someone on here or Aspire boards did get treatment because of a Navdx test, after the test came back positive they found a lesion on their rib which then led to radiation treatment which probably saved his life! The NavDx test was more accurate than the PET which missed the lesion. The test is so accurate it has now been approved by Medicare for use which is a BIG step. EVERY major cancer center has nothing but good things to say about this test. What it can do is alert the doctor there is an issue brewing so they can watch more closely watch and catch something before it becomes to big to treat. Pet scans have NEVER been an accurate monitoring tool for me. They always have uptake and do in many head and neck patients due to inflammation and scar tissue. This test will save so many lives and help with treatment guidance. If a NavDx test is positive it is not from dead cancer cells leaving the body, it is from cancer circulating. This is the biggest positive step forward for head and neck cancer coupled with immunotherapy we have witnessed in a LONG time.
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NavDx is a completely useful tool, it can't locate but it alerts very effectively. Some ENT's don't like it because they're on the "See and Cut" program. If the only tool in your bag is a hammer, you only look for nails! Adding this test to surveillance is a burden to some ENT's. ENT's don't want to deal with a patient turning up positive NavDx numbers, with nothing to cut out. Additionally, ENT's are not interested in anything that is not a consolidated tumor. I had a lot of very interesting tissue changes come and go for a year before my tonsil was positive. I tried to engage the interest of a couple of ENT's in tissue activity in my pharynx, both pre and post cancer. I had the silly idea that this could be useful data as to the onset of P16+ SCC, to no avail.
I am here to say that in some cases, such as mine, oral HPV16 is not latent! It has a real presence, actively changing tissues in the pharynx causing lesions and pain that come and go, all well in advance of SCC. Why would someone not want to look at these cases in advance of it becoming cancer? I would think there is a lot of knowledge in observing this. However, if every time a patient reports this, it is dismissed with the belief that "HPV16 does not have pre cancerous symptoms", we will never know. Long story short, I'm saying that I am glad there are some people out there like the folks at Naveris that are looking at the biology of P16+ SCC. This disease will not go away with Chemo Beamo Cut, it will take a path that aligns more with this test over the stone age approach!
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It’s interesting that when I scored a 4 on one of my tests that the folks at NavDx couldn’t really explain why it was not negative but they felt like it was not from live cancer cells. And like I’ve said I’ve been negative for the last 5 tests. I really feel like I’ve been NED since before August 2022
Also, my scans still show a couple of spots that look like nodules but they’ve not changed in over 18 months.
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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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Thank you for sharing this. My last NavDx was zero after the completion of surgery over a year ago. I did have one negative PET scan and MRI showing NED since then. I asked my surgeon if I should have more NavDX testing and was told it was not part of the protocol. This concerns me as my next set of scans is not until December of this year. I see my radiologist on April 29th and will ask if I can have a NavDx test. I wonder if this is something I can request and pay for on my own if my care team does not think it's necessary.
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Thanks for these comments! I was diagnosed with squamous cell carcinoma base of tongue HPV 16 positive and am 5-1/2 weeks out from surgery at Mayo Clinic Rochester. I am currently halfway through a short course (2 weeks) of low-dose radiation/chemo off-trial. I was offered this option due to the fact that I had a very good pathology report post-op: clear margins, no ENE and only one lymph node involved. Unfortunately, that one lymph node was large (3.7 cm), so the team here suggested the short course of radiation to drive my risk of recurrence down to 5% or less. I think it's worth it. (I also participated in a clinical trial pre-op consisting of two rounds of immunotherapy plus an experimental vaccine. Again, in hopes of attacking this disease in a systemic way that will help me avoid recurrence.) My NavDx decreased somewhat during immunotherapy and then went to zero post-op. Mayo uses NavDx extensively during diagnosis, treatment and surveillance. This is the future, my friends! I would definitely demand this test be done as an "early warning system." I will receive a NavDx test each time I come back to Mayo for surveillance. Hoping to keep it at zero! If anyone else has undergone the 2-week course of radiation, I would love to hear from you. Also, still trying to find a woman diagnosed with otolaryngeal HPV 16-driven cancer on this discussion board! Looks like all guys so far...
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It sounds like you are receiving the best care! I am so glad you are able to just have a short course of radiation. My husband did very well for about 4 weeks with the radiation before he had any side effects. It sounds like you will be done with it all very soon. That is great! best wishes for a complete and speedy recovery.
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Thank you! Best to you and your husband, as well. Onward!
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Hi and thanks for the good news NavDX post. I had a NavDX positive 37 in Feb 24. I am just finishing up making the rounds with my ENT, Rad team and Oncologist and doing blood work. Do you know what your husbands WBC was when they found the Tumor ???? Or was any of the blood work off at that time. I know the you said the tumor was small when it showed up on a scan. I figure because of the size of the tumor the blood work may not show that much of a difference. Your post made me think of talking to my Rad team about the difference in CT-PET-and MRI scans catching the tumor at different sizes. I have a NavDX planned for Early May with a PET to follow. I may ask for another scan to back that one up.....Thanks for your post. It showed how valuable the NavDX is as a tool for early detection...........Bill
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My husband's lab work is all normal except for the fact that he is a bit anemic, which is being treated with iron supplements and is longstanding since his chemoradiation. His tumor is in his liver, but his liver enzymes are all normal and the PT/CT and MRIs showed nothing abnormal in the liver itself except the small tumor. The PET/CT scan in Feb. lit up the area of concern in his liver that his CT scan in Dec. did not show. After the positive PET/CT they did the MRI to better guage the size of the tumor. His NavDx jumped from 13 to 74 in just 3 months, that is when they ordered the PET. I seem to recall in the article from the NavDX website that the definitive clinical evidence of a tumor occurred on average with a NavDX around 75, which correlates with my husband's experience. However, the article said that some people had clinical evidence of disease with NavDX levels as low as 7. In August my husband had a PET scan that showed nothing when his NavDx was 13. I guess that is what is so difficult right now. There are no clear guidelines for when to look beyond scopes and CT scans. I would want a scan if I had a level of 34, but nothing may show yet. I guess the best we can do is continue getting NavDX every 3 months and wait. At some point we may have better answers, like PET/CT when levels reach 75, or maybe if the NavDx doubles in 3 months. Who knows! That is why clinical research and a physician's experience in treatment is so important. Good luck to you Bill.
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The NavDX test now has a payment code assigned to it and as of January Medicare paid for my husband's test. Prior to that they had denied payment in 2021 and 2022, however Narveris lab wrote off the charges. Now that there is a payment code, your insurance may cover it. Good luck to you. I would definitely get a Navdx done. Surgeons are less likely to know a lot about NavDX, but your rad. onc should be willing to order it. If you can get your hands on the article I mentioned, I would take a copy of it with you when you see your rad. onc. Good luck to you.
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Hello, Loghomeliver, and welcome to the CSN H&N discussion forum.
I am so glad to read your husband's story and finally a well-explained cancer episode that the NavDX test is being used in. There still remain some unsettled protocols that need to be worked out with this in the medical and treatment field as I don't believe it is used everywhere and some of the places I have read about and stories related on here are not sure of the next step to take following a positive test.
But your husband's doctors obviously are set to go and have protocols in place knowing just what to do in such a case. Thanks for your story, explained well and gave us a real-life scenario of how the plan and happenings of using the NavDX test can and should play out.
With a reading of NED (No Evidence Of Disease)
To God Be The Glory
Wishing You The Best
Take Care, God Bless
Russ
I celebrate with you...
I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.
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Thank you so much for your support. I have been reading your posts and all the information here since my husband was diagnosed. It has been so helpful. I didn't feel that I had too much to add up until now, but I think sharing my experience with NavDx might be helpful to someone. We are so impressed with the care and the physicians that we have encountered at the The James Cancer Center at Ohio State and feel blessed to have this facility in our backyard. Nice to have this forum!
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I am female, diagnosed wit BOT HPV positive cancer in May of 2022, was treated at Mayo Clinic in Rochester, MN and underwent induction chemotherapy with carboplatin and paclitaxel then 30 proton radiation treatments with weekly Cisplatin. Mayo did NOT do a Navdx pretreatment. They have been doing them since treatment ended. I am around 19 months out. They STILL also do not know what to do with positive results they told me other than watch and wait.
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