I know you posted a while ago, but I was wondering what happened in your case?
My mother (Stage IV UTUC (cTX, cN2, cM0)) is undergoing serial molecular testing via Natera / Signatera. At the moment, it seems our oncologist is using it to help measure treatment response.
I know you posted a while ago, but I was wondering what happened in your case?
My mother (Stage IV UTUC (cTX, cN2, cM0)) is undergoing serial molecular testing via Natera / Signatera. At the moment, it seems our oncologist is using it to help measure treatment response.
I had Stage 2, aggressive, muscle invasive bladder cancer diagnosed in April 2023. I had 12 weeks of chemo, Radical Cystectomy, and one year of immunotherapy. My Natera has stayed steady at around 0.17 molecules/ml. My oncologist wishes it was down to zero, so I continue having a Natera blood test every four months and also a CT scan. My oncologist says the Natera test is so new that oncologists are still learning how to use it. If you don't mind answering, what Natera numbers are your mother getting and how is her treatment being adjusted?
@babab , my mom is Stage IV urothelial carcinoma (high grade) of the upper tract (originating in the kidney / renal pelvis) with local lymph node involvement but no distant metastasis per PET scan.
We just started the third of 4-6 planned cycles of EV/Pembro, with a nephroureterectomy possibly in the treatment plan depending on response. At baseline, Natera sent two reports saying "quantity not sufficient" before inexplicably providing a third report giving her a value of 81.38 MTM / mL. This was higher than our oncologist was expecting (given lack of visible distant metastasis) but also all of this is so new, so hard to really know how to interpret.
On her second test (after her second cycle), the result was 0.00 or "Negative". We want to do cartwheels but it also seems too good to be true. Our oncologist agreed that he wanted to directly discuss with Natera, to try and gauge how much confidence he and we should have in the most recent Natera report.
The one adjustment as a result of the second report is that we are now confirmed for a consolidative nephroureterectomy after completion of just four cycles, assuming continued good news from Natera and confirmation from imaging. But it's a weird emotional place to be, to not have complete faith in a test, because our initial experience was so bumpy.
Glad to hear your MTM / mL is holding steady! You are fighting the good fight ... I hold warriors like my mom and you in so much awe.
ETA: we just got a phone call from the oncologist. Sounds like he has confidence in both results (the higher-than-expected baseline, and the second one reading 0.00), and got to see "under the hood" by speaking with a clinician at Natera directly. Even though this second report reads 0.00 and "Negative", there is a trace amount of one mutation (of the 16 tumor-informed mutations they're looking for) remaining. Natera needs to see measurable amounts of two or more mutations to read "Positive", which increases the test's specificity. So it's good we're proceeding with the third and fourth cycles in any case. But he used the term "cautiously optimistic" in the call, and agreed my mom was having a very "brisk" response to the EV/Pembro, which suggests a good outcome.
My PT3AN1M0 was treated with RC and then four cycles of DD-MVAC. My Signatera so far has been negative (2024-12-04, 2025-01-21, 2025-03-05). My Mayo oncologist has added Northstar Response (first draw 2025-03-06) at my request and it came back at 31 (just above the 25 bottom range). I am waiting on his next step: perhaps nivolumab immunotherapy. Or perhaps wait for a re-test in 2025-04. A successive Northstar Response test may come back negative in case the fourth DD-MVAC cycle (2025-03-06) was effective or earlier DD-MVAC cycles were already effective and the ctdna detected was necrosis dna. My 2025-02 CT/MRIs were clean. My next set of CT/MRIs are in 2025-05. But perhaps these will be moved up.
I am the first urology oncology Northstar Response patient at Mayo Jacksonville, FL. My oncologist is unfamiliar with this agnostic ctdna test and noted that there is very limited data on it. Northstar Response is 10X more sensitive than Signatera apparently. My oncologist has repeatedly told me that signatera informs his treatment decisions. Perhaps Northstar Response will also assist in his treatment assessment.
My oncologist told me this week he may skip nivolumab to ensure ev/keytruda is an option. If opdivo fails that may exclude future use of keytruda. So it is a challenging decision.
My PT3AN1M0 was treated with RC and then four cycles of DD-MVAC. My Signatera so far has been negative (2024-12-04, 2025-01-21, 2025-03-05). My Mayo oncologist has added Northstar Response (first draw 2025-03-06) at my request and it came back at 31 (just above the 25 bottom range). I am waiting on his next step: perhaps nivolumab immunotherapy. Or perhaps wait for a re-test in 2025-04. A successive Northstar Response test may come back negative in case the fourth DD-MVAC cycle (2025-03-06) was effective or earlier DD-MVAC cycles were already effective and the ctdna detected was necrosis dna. My 2025-02 CT/MRIs were clean. My next set of CT/MRIs are in 2025-05. But perhaps these will be moved up.
I am the first urology oncology Northstar Response patient at Mayo Jacksonville, FL. My oncologist is unfamiliar with this agnostic ctdna test and noted that there is very limited data on it. Northstar Response is 10X more sensitive than Signatera apparently. My oncologist has repeatedly told me that signatera informs his treatment decisions. Perhaps Northstar Response will also assist in his treatment assessment.
My oncologist told me this week he may skip nivolumab to ensure ev/keytruda is an option. If opdivo fails that may exclude future use of keytruda. So it is a challenging decision.
My pleasure. Being an informed patient can cause friction with medical providers. I always emphasize that I am unqualified in my conversations with the medical team.
I had nivolumab immunotherapy for 12 months. I did that because my oncologist highly recommended it. It does have side effects which were deemed worth it. I had maddening itching which is the most common side effect. Itching was managed with Dupixent injections. My CT, Pet, and MRI scans are all clear. I am 75 by the way. Thanks for interesting replies in this discussion.
My oncologist is on the fence regarding nivolumab but pushed DD-MVAC pretty passionately. Interested how different oncologists suggest different treatments. Wait and see what he says this week.
The Northstar ctdna could be waste dna product since it is so low and signatera was repeatedly negative. Wait and see what it comes back as next round.
My PT3AN1M0 was treated with RC and then four cycles of DD-MVAC. My Signatera so far has been negative (2024-12-04, 2025-01-21, 2025-03-05). My Mayo oncologist has added Northstar Response (first draw 2025-03-06) at my request and it came back at 31 (just above the 25 bottom range). I am waiting on his next step: perhaps nivolumab immunotherapy. Or perhaps wait for a re-test in 2025-04. A successive Northstar Response test may come back negative in case the fourth DD-MVAC cycle (2025-03-06) was effective or earlier DD-MVAC cycles were already effective and the ctdna detected was necrosis dna. My 2025-02 CT/MRIs were clean. My next set of CT/MRIs are in 2025-05. But perhaps these will be moved up.
I am the first urology oncology Northstar Response patient at Mayo Jacksonville, FL. My oncologist is unfamiliar with this agnostic ctdna test and noted that there is very limited data on it. Northstar Response is 10X more sensitive than Signatera apparently. My oncologist has repeatedly told me that signatera informs his treatment decisions. Perhaps Northstar Response will also assist in his treatment assessment.
My oncologist told me this week he may skip nivolumab to ensure ev/keytruda is an option. If opdivo fails that may exclude future use of keytruda. So it is a challenging decision.
This is very interesting. My oncologist (as well as another seen to see if I would qualify for a clinical trial) both agreed that Opdivo and Keytruda are like Coke and Pepsi. Not much difference. I had to go with Opdivo due to my insurance. I started it on 12/30 and the plan is to do 1 year. I was T3N1M0. I like to say was like I'm done. LOL My only real side effect has been the recent shutdown of my thyroid. I'm on medication for that now. I have my second Natera test and another CT this week. My doctors seem to be holding their breath a bit.
There is a significant difference in that opdivo is not combined with padcev like keytruda.
My oncologist is OOO this week (FL spring break). So far I have been unable to make an appointment for next week. Scheduling has availability in May. Obviously, I cannot wait that long nor is that clinically sound. I frequently run into bureaucracy at Mayo unfortunately. Departments are very siloed and the staff not always very emphatic.
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Hi @babab ,
I know you posted a while ago, but I was wondering what happened in your case?
My mother (Stage IV UTUC (cTX, cN2, cM0)) is undergoing serial molecular testing via Natera / Signatera. At the moment, it seems our oncologist is using it to help measure treatment response.
All the best,
jsbsmith
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1 ReactionI had Stage 2, aggressive, muscle invasive bladder cancer diagnosed in April 2023. I had 12 weeks of chemo, Radical Cystectomy, and one year of immunotherapy. My Natera has stayed steady at around 0.17 molecules/ml. My oncologist wishes it was down to zero, so I continue having a Natera blood test every four months and also a CT scan. My oncologist says the Natera test is so new that oncologists are still learning how to use it. If you don't mind answering, what Natera numbers are your mother getting and how is her treatment being adjusted?
-
Like -
Helpful -
Hug
1 Reaction@babab , my mom is Stage IV urothelial carcinoma (high grade) of the upper tract (originating in the kidney / renal pelvis) with local lymph node involvement but no distant metastasis per PET scan.
We just started the third of 4-6 planned cycles of EV/Pembro, with a nephroureterectomy possibly in the treatment plan depending on response. At baseline, Natera sent two reports saying "quantity not sufficient" before inexplicably providing a third report giving her a value of 81.38 MTM / mL. This was higher than our oncologist was expecting (given lack of visible distant metastasis) but also all of this is so new, so hard to really know how to interpret.
On her second test (after her second cycle), the result was 0.00 or "Negative". We want to do cartwheels but it also seems too good to be true. Our oncologist agreed that he wanted to directly discuss with Natera, to try and gauge how much confidence he and we should have in the most recent Natera report.
The one adjustment as a result of the second report is that we are now confirmed for a consolidative nephroureterectomy after completion of just four cycles, assuming continued good news from Natera and confirmation from imaging. But it's a weird emotional place to be, to not have complete faith in a test, because our initial experience was so bumpy.
Glad to hear your MTM / mL is holding steady! You are fighting the good fight ... I hold warriors like my mom and you in so much awe.
ETA: we just got a phone call from the oncologist. Sounds like he has confidence in both results (the higher-than-expected baseline, and the second one reading 0.00), and got to see "under the hood" by speaking with a clinician at Natera directly. Even though this second report reads 0.00 and "Negative", there is a trace amount of one mutation (of the 16 tumor-informed mutations they're looking for) remaining. Natera needs to see measurable amounts of two or more mutations to read "Positive", which increases the test's specificity. So it's good we're proceeding with the third and fourth cycles in any case. But he used the term "cautiously optimistic" in the call, and agreed my mom was having a very "brisk" response to the EV/Pembro, which suggests a good outcome.
My PT3AN1M0 was treated with RC and then four cycles of DD-MVAC. My Signatera so far has been negative (2024-12-04, 2025-01-21, 2025-03-05). My Mayo oncologist has added Northstar Response (first draw 2025-03-06) at my request and it came back at 31 (just above the 25 bottom range). I am waiting on his next step: perhaps nivolumab immunotherapy. Or perhaps wait for a re-test in 2025-04. A successive Northstar Response test may come back negative in case the fourth DD-MVAC cycle (2025-03-06) was effective or earlier DD-MVAC cycles were already effective and the ctdna detected was necrosis dna. My 2025-02 CT/MRIs were clean. My next set of CT/MRIs are in 2025-05. But perhaps these will be moved up.
I am the first urology oncology Northstar Response patient at Mayo Jacksonville, FL. My oncologist is unfamiliar with this agnostic ctdna test and noted that there is very limited data on it. Northstar Response is 10X more sensitive than Signatera apparently. My oncologist has repeatedly told me that signatera informs his treatment decisions. Perhaps Northstar Response will also assist in his treatment assessment.
This patient has a blog where I learned about Northstar Response. https://www.treffertinnovations.com/blog.html
My oncologist told me this week he may skip nivolumab to ensure ev/keytruda is an option. If opdivo fails that may exclude future use of keytruda. So it is a challenging decision.
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2 Reactions@jaxfl , very helpful reply, thanks so much! I just checked out that Treffert blog ... what a great resource. Thank you for sharing.
My pleasure. Being an informed patient can cause friction with medical providers. I always emphasize that I am unqualified in my conversations with the medical team.
I had nivolumab immunotherapy for 12 months. I did that because my oncologist highly recommended it. It does have side effects which were deemed worth it. I had maddening itching which is the most common side effect. Itching was managed with Dupixent injections. My CT, Pet, and MRI scans are all clear. I am 75 by the way. Thanks for interesting replies in this discussion.
-
Like -
Helpful -
Hug
1 ReactionMy oncologist is on the fence regarding nivolumab but pushed DD-MVAC pretty passionately. Interested how different oncologists suggest different treatments. Wait and see what he says this week.
The Northstar ctdna could be waste dna product since it is so low and signatera was repeatedly negative. Wait and see what it comes back as next round.
This is very interesting. My oncologist (as well as another seen to see if I would qualify for a clinical trial) both agreed that Opdivo and Keytruda are like Coke and Pepsi. Not much difference. I had to go with Opdivo due to my insurance. I started it on 12/30 and the plan is to do 1 year. I was T3N1M0. I like to say was like I'm done. LOL My only real side effect has been the recent shutdown of my thyroid. I'm on medication for that now. I have my second Natera test and another CT this week. My doctors seem to be holding their breath a bit.
There is a significant difference in that opdivo is not combined with padcev like keytruda.
My oncologist is OOO this week (FL spring break). So far I have been unable to make an appointment for next week. Scheduling has availability in May. Obviously, I cannot wait that long nor is that clinically sound. I frequently run into bureaucracy at Mayo unfortunately. Departments are very siloed and the staff not always very emphatic.