My 8/27 Signatera was negative again fortunately. My 8/28 CT scan showed ground glass, mucus plugging and a few nodules < 4mm. My oncologist and Cancer Commons think this is another IRAE. Likely related to my left side sinusitis symptoms. So this negative Signatera highly likely corroborates this. My 8/27 MRI was clear and even showed the liver iron deposit (likely cause by 2X 1000MG iron IV before and during DDMVAC) resolved as did the adrenal glad atrophy (another IRAE).
This study used a 120 cut off for clinical relevance of Northstar Response values and it also explicitly states every patient has a methylation baseline. So very low burdens are not clinically interpretable. Which correlates with the emphasis on using Northstar for late stage malignancy and not to use it for MRD/recurrence or early stage malignancy. https://www.nature.com/articles/s41598-025-90013-3
Northstar Response came back at 44. Up 1 from 5/29 43. Which is bizarre. If nivo is ineffective it would go up. If nivo is effective it would be down. The most plausible hypothesis is that this is aberrant but not malignant methylation. The assay was updated and far more sensitive now with a 10 to 400K scale. B2O also includes language not to use it for mrd/recurrence monitoring.
Mayo forgot to put in the order for Northstar so they only started processing my sample on 8/5. Now I have to wait until Thursday or Friday this week for the results. Another disappointing Mayo experience. I wonder if it is incompetence or deliberate.
Mayo forgot to put in the order for Northstar so they only started processing my sample on 8/5. Now I have to wait until Thursday or Friday this week for the results. Another disappointing Mayo experience. I wonder if it is incompetence or deliberate.
I've read on this discussion board a few times that the initial tissue samples have not been good enough and were inadequate for the Natera initial sample test. My situation was exactly the same. The initial tissue sent was from my RC surgery and unable to be used. They requested the turbt tissue taken five months prior to that (at the time of diagnosis) and that tissue was able to be tested. I assumed it had to do with my adjuvant chemotherapy. The surgeon and oncologist agreed the chemo prior to RC had successfully attacked the cancer. I assumed that made sense that the same tissue (if damaged by chemo) would not test well.
I've not had any issues with the Natera tests since then.
I’m sorry, but I have not had any really good experience with Natera. So, I have never gotten any results from them. My journey with them started almost two months ago. On June 6th., my oncologist ordered the test. Within a few days, Mayo in Arizona sent the sample and it was received at natera according to my patient portal.
After a few days, my portal indicated that natera needed new samples. Apparently, the first sample was not giving them enough information. In contacting them on 6/23, I was told they requested samples from Abrazo Arrowhead hospital where I had my Turbt procedure done in early July 2024. To this day they will not confirm if the samples were ever received.
I waited patiently hoping they received the tissue and the test was in process. Finally, on July 18th. I called Natera and was told they were in process of getting tissue from Abrazo hospital AGAIN. The representative said my oncologist was called and it was agreed between both parties that was the best solution. Four days later I received a call from a different person that told me they received a different sample from Mayo and it would take 4 weeks plus to get the results because it was the first time for the test.
It still shows that Natera is waiting for tissue. They don’t seem to do anything until myself or my oncologist office check for an update. I believe that I am destined to not have the Signatera test done. It would have helped me and my oncologist to decide what action to take.
New northstar assay drawn today. They did not bring the northstar kit yesterday. It was the first time ever for CCBW so not unexpected. Unfortunately, the RN was delayed this morning so nivo 5 was at 1130AM instead of 10AM. Kind of a disappointment. And CCBW had no idea what happened so I was a bit upset. Not the RN's fault. I have had headaches all week along with a stuffy nose and discomfort in my nasal cavities so it looks like I have a sinus infection or (nivo intensified) allergies on my left side.
It was both. Natera told me the samples are valid for seven days. It turns out to be 10 days. Mayo delayed sending the samples. Mayo called me yesterday to apologize. They are working on improving the process.
Thank you! Wait and see. Hopefully, Signatera remains negative.
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My 8/27 Signatera was negative again fortunately. My 8/28 CT scan showed ground glass, mucus plugging and a few nodules < 4mm. My oncologist and Cancer Commons think this is another IRAE. Likely related to my left side sinusitis symptoms. So this negative Signatera highly likely corroborates this. My 8/27 MRI was clear and even showed the liver iron deposit (likely cause by 2X 1000MG iron IV before and during DDMVAC) resolved as did the adrenal glad atrophy (another IRAE).
Based on additional personal research my hypothesis appears reasonable.
This study indicates ICI response with significant reduction in Northstar Response and low burden to begin with. https://ascopubs.org/doi/pdfdirect/10.1200/JCO.2025.43.16_suppl.e14548
This study used a 120 cut off for clinical relevance of Northstar Response values and it also explicitly states every patient has a methylation baseline. So very low burdens are not clinically interpretable. Which correlates with the emphasis on using Northstar for late stage malignancy and not to use it for MRD/recurrence or early stage malignancy. https://www.nature.com/articles/s41598-025-90013-3
Northstar Response came back at 44. Up 1 from 5/29 43. Which is bizarre. If nivo is ineffective it would go up. If nivo is effective it would be down. The most plausible hypothesis is that this is aberrant but not malignant methylation. The assay was updated and far more sensitive now with a 10 to 400K scale. B2O also includes language not to use it for mrd/recurrence monitoring.
Oh no! Another issue! I'm sure that's frustrating.
Mayo forgot to put in the order for Northstar so they only started processing my sample on 8/5. Now I have to wait until Thursday or Friday this week for the results. Another disappointing Mayo experience. I wonder if it is incompetence or deliberate.
My 2024-1016 TURBT tissue had to be used. I had to coordinate with Baptist to get it to Natera.
I've read on this discussion board a few times that the initial tissue samples have not been good enough and were inadequate for the Natera initial sample test. My situation was exactly the same. The initial tissue sent was from my RC surgery and unable to be used. They requested the turbt tissue taken five months prior to that (at the time of diagnosis) and that tissue was able to be tested. I assumed it had to do with my adjuvant chemotherapy. The surgeon and oncologist agreed the chemo prior to RC had successfully attacked the cancer. I assumed that made sense that the same tissue (if damaged by chemo) would not test well.
I've not had any issues with the Natera tests since then.
I’m sorry, but I have not had any really good experience with Natera. So, I have never gotten any results from them. My journey with them started almost two months ago. On June 6th., my oncologist ordered the test. Within a few days, Mayo in Arizona sent the sample and it was received at natera according to my patient portal.
After a few days, my portal indicated that natera needed new samples. Apparently, the first sample was not giving them enough information. In contacting them on 6/23, I was told they requested samples from Abrazo Arrowhead hospital where I had my Turbt procedure done in early July 2024. To this day they will not confirm if the samples were ever received.
I waited patiently hoping they received the tissue and the test was in process. Finally, on July 18th. I called Natera and was told they were in process of getting tissue from Abrazo hospital AGAIN. The representative said my oncologist was called and it was agreed between both parties that was the best solution. Four days later I received a call from a different person that told me they received a different sample from Mayo and it would take 4 weeks plus to get the results because it was the first time for the test.
It still shows that Natera is waiting for tissue. They don’t seem to do anything until myself or my oncologist office check for an update. I believe that I am destined to not have the Signatera test done. It would have helped me and my oncologist to decide what action to take.
New northstar assay drawn today. They did not bring the northstar kit yesterday. It was the first time ever for CCBW so not unexpected. Unfortunately, the RN was delayed this morning so nivo 5 was at 1130AM instead of 10AM. Kind of a disappointment. And CCBW had no idea what happened so I was a bit upset. Not the RN's fault. I have had headaches all week along with a stuffy nose and discomfort in my nasal cavities so it looks like I have a sinus infection or (nivo intensified) allergies on my left side.
7/1 signatera was negative fortunately.
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