NavDX positive test
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Take a breath time. I told my wife about what I read about NAVdx test online and had a discussion. I thought that with current treatments Dr's don't really know what to do with the 18 month lead time the navdx test gives them. I decided I don't want the test, at least until treatment catches up to early detection. I hate hospitals, am not a selfless volunteer, and would rather spend my days looking forward other than over my shoulder using this second chance to be a better man, and start to be grateful for every day instead of taking life for granted.
For me, that NAVdx would do nothing but ruin my calm.
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Obviously everyone should do whats best for them, but, with that being said, IF early detection allows you far less invasive treatment options isn't that a worthy choice? For example, in my case, because my cancer load was so small when detected I was a candidate for immunotherapy which, again in my case, has little to no side effects and has been extremely effective. It’s possible that had I waited until the cancer had grown I might need to go through radiation again or other more harmful treatments.
I’m just a patient like all of you with no particular medical trading so this is not “advice”, just input into a conversation. I can only speak from my experience and have always operated under the advice of my physician team.
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My physician team was very helpful in looking at trials, contacting the other hospital that was conducting the and setting up appointments at that hospital. The also were helpful when I “flunked” my first set of labs and was disqualified in helping me retake the labs so I could finally qualify. I hope your team is as supportive. (Hint: some labs are better done in the afternoon than the morning as there is a natural rise in levels…..and taking a huge dose of Vitamin C also may have helped. Something about lymphocytes????)
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I hear you on that one.. because my focus is on maintaining the calm as well. Like I said in my other post... I do believe internal stress in our bodies re-activates the dormant viruses if we are not able to get control of it. I have what I would like to think is a solid foundation of faith and obedience, daily prayer, and "trust" in the Lord. These instances are definitely tests... and times to reflect on just how solid my "trust" is if I am letting something like a "positive" blood test get me all anxious and worried. So, for me, it is all about strengthening my trust, and only looking forward. Like this little kid said in a Bible study class a few weekends ago.... "I am blessed because I have the Lord in my heart". While I also do not like hospitals, so far this month, on top of the two scans this month... it is time for my 7-year follow-up colonoscopy next week as well. yippee.
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I agree with you on that LuvnTN Trust on the Lord with all your heart and lean Not on your own understanding. In all thy ways acknowledge him, and he shall direct thy paths. I agree we are certainly Blessed in more ways than we know or can count. I think of the chorus to the song Count your Blessings and sometimes write them down on paper and before long I have quite a list.
Count your blessings, name them one by one;
Count your blessings, see what God hath done;
Count your blessings, name them one by one;
Count your many blessings, see what God hath done.
Here is a song that references that:
And sometimes you just have to hang on to get through a situation:
Take care, God Bless-Russ
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NavDx results to qualify for radiation de-escalation clinical trial
I saw my radiation oncologist today for the first time today. He explained to me that I could have been a candidate for a 2 week low dose de-escalation radiation trial, but my NavDx blood test was drawn after my positive lymph nodes were removed. At the time of the surgery, my ENT thought it was a benign cyst as the biopsy was inconclusive but during the procedure discovered it was matted lymph nodes that ended up being cancerous. The criteria for admission to the trial is a NavDx score of 200-250. My first test scored 95 which was from the remining primary small tonsil tumor. I was told It is likely I would have qualified if I got the test before the node removal but cant be accepted now. So the plan is now 5 weeks of 50GY radiation treatments. Hopefully this info can help someone in the future to ask for the NavDx early in the process.
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I have had 6 Nav Dx test as result of my tonsil cancer july of 2020. The ENT world does not love this test for some reason. My treatment was surgical only TORS and selective neck Level 4. I will be honest in saying I have more faith it the NavDx test then in office visits with my ENT.
Very willing to talk more on this subject!
Good luck
Gordon
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What types of immunotherapy?
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I forgot which topic I was updating my NavDX journey... so, I will just post it on both discussions: "Okay, follow-up to the rising NavDX numbers. To recap, I had a "negative" result approx six months post treatment (surgery/cisplatin/radiation). Jan 17th, 2023, one year post treatment, ENT physical check was NED; however, a NavDX "positive" of 8... followed up by a "positive" of 78 a few weeks later. PET last night, and follow-up with oncologist this morning revealed a metastasis "spot" on my lower, right rib bone lit up in scan. When the oncologist pointed to the approximate spot, I mentioned that that was interesting... because I had been the doctor for a "pain" in that spot prior to any diagnosis of cancer in the head and neck. So, she went back and reviewed my first PET scan (pre-surgery and treatment) from back in Sept of 2021. Guess what? It was there as well... they had just missed it. The inital PET was poor resolution, and the spot was lightly "lit up". To explain the first "negative" of nearly zero on the NavDX last year, the oncologist thinks that the chemo probably knocked it down enough to almost get rid of it... but didn't clear it completely. As a result, it started growing again... thus, the rising numbers. So, good news is that there is no new metastasis. Also, she said that the location of this spot is ideal for curative, medium-dose radiation (possibly only 3-4 treatments) to zap that one spot. Followed up 3 months from now with another PET to check for effectiveness. All in all, I am pretty pleased. Thank God for the NavDX! Without it, I would be blissfully ignorant.... assuming I was NED. Instead, I am jumping on a treatment plan asap. Also, the colonoscopy biopsy came back "benign" (however, it is pre-cancerous). So, I go to a colonoscopy every 3 years now vs every 7 years."
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I think that the first pet showed the cancer and it was missed makes the nav dx, in your case, a complimentary failsafe to human error and I totally get that.
At my 1 month yesterday I asked my Dr what he thought of the nav dx He sounded genuinely impressed with the potential he, personally didn't know how the information would improve their treatment strategy(my impression of his words).
My Dr offered to order me the test down the road warning me insurance may or may not cover it. As cancer seems to be unique to the individual maybe this is my one shot idk. nobody has suggested immuno therapy to me and even chemo was only offered as an alternative to surgery so...
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I have had two, different insurance plans.. and the NavDX was covered by both. Also, the fact that there was a distant metastasis before my surgery/treatment, meant that I didn't catch anything early. It had actually progressed pretty far down the road... which explains why of the 54 total lymph nodes removed, 38 were positive for cancer (with one nodal extension). I read all of the time about people who have no nodal involvement, or between one and ten nodes involved. Obviously, that is a much-earlier detection than what I experienced... and treatment/follow-up recommendations probably change accordingly.
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LunTN - thanks for all your NavDX updates. Both my oncologist and radiologist are employing the blood test as part of our surveillance plan. Together, all the data tools (PET, CT NavDX, physical exam, etc) help with assessments and treatment plans. My initial NavDX test (pre-treatment) registered at 209, and post treatment registered at 0. Now, I'm having them done every 90-days......NavDX presently does not charge. With a 95% accuracy claim, it is these type of advancements that make early detection and prognosis hopeful.
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I received my NavDX blood test results today and they were NEGATIVE!! 👏🏼🙌 So as of today I’ll be suspending my Keytruda treatments. Just to recap, I was diagnosed with HPV related H/N cancer in January 2021 and received 37 radiation treatments and 7 chemo infusions. After all of that it was determined that it had metastasized into my lungs so I was now stage 4. I immediately entered a Pembro trial and have been getting treatments every 3 weeks for almost 2 years. Given a prognosis that it would never go away I’m happily surprised that according to this blood test I am cancer free!!! (This is actually my 3rd negative test since last Sept so I’m considering it a confirmation. )Thank goodness for modern science and thank goodness for you all .you’ve helped me so much. It’s been quite a road…..🍻💓
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