NavDX positive test

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

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.

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!

Many it depends on the score with first cancer I had a 52 and most are higher I went from stage one to stage four in two and a half years

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.

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...

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.

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

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.

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!