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← Return to Onward with durable remission
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You say you had a durable remission in 2024. Did you get another PSMA pet test to see if those 25+ metastasis have actually disappeared? It’s a known fact that metastasis can grow even with an undetectable PSA (recent studies)..
I have BRCA2 also, I’ve been undetectable for 11 months now, on Darolutamide, with Zytiga I was only undetectable one month in 2 1/2 years . I only had one metastasis and had it zapped. I know that if I drop the medicine I’m on my PSA will start to rise quickly, as it has done for four remissions already. With BRCA2 your body doesn’t have the ability to correct errors in DNA, so the errors continued to pile up, it’s just a matter of time before your PSA will show it.
I had IMRT radiation 3 1/2 years after RP. That gave me another 2.5 years undetectable. But this is been going on for 15 years in January. If I were to stop drugs, I would start taking blood test monthly because I know the risk..
ADT and Zytiga will stop your cancer from growing and may shrink it a little, unlikely to totally eliminate those 25+ metastasis.
I was in a meeting Thursday with 21 Advance prostate cancer people and the moderator has BRCA2. He went on drug holidays two different times.. He says his body now lights up like a Christmas tree in a pet scan. Stopping and starting the drugs when you have BRCA2 can be dangerous to your health. It sure has been for him.
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Thank you JeffMarc for the excellent response and congratulations on progressing for 15 years on this unfortunate journey that we all have in common.
My health team is of the opinion that a PSMA PET at this point wouldn’t show much as the expression of PSA is required for the test itself to work. That being said, the first line of action if my PSA increases is to order a PSMA PET and that might happen in early December, or early February as I’m aiming to test every other month for now.
I must admit that with my limited (but slowly growing knowledge) of BRCA2 that I am hard pressed to convince myself that the PCa remains in remission, however I'm at a point in my life right now where I’m interested in taking a holiday from the ADT+ARSI and see if it I can muster up some improved energy levels and lose a bit of weight.
Here is my finding from the PSMA PET, in general the lights on my Christmas tree aren’t that big…
Head/Neck: Moderately PSMA avid left supraclavicular nodes measuring up to 1 cm in short axis (image 240, SUV max 6.6). Chest: Mildly avid paraesophageal node measuring 0.8 cm in short axis (image 213, SUV max 3.3). Abdomen/pelvis: Multiple FDG avid abdominal and pelvic nodes including an aortocaval node measuring up to 6 mm in short axis (image 124, SUV max 4.2), right distal common iliac nodes measuring up to 6 mm in short axis (images 103 and 100), 2 adjacent right external iliac nodes measuring up to 5 mm in short axis (image 85), 4 mm right internal iliac node (image 80) and 0.7 cm left external iliac node (image 86). No abnormal foci of uptake in the region of the prostate bed. Of note, no abnormal uptake is noted within the liver in the region of previously described 0.9 cm right hepatic lobe lesion which is not well appreciated on this noncontrast CT. Musculoskeletal: Normal
… but my heath team and I are in agreement that if the PSA rises and the PSMA PET lights up on a much smaller number of nodes (or the same amount) that we will re-evaluate, and this time around I’m now in a much better place with my new job (low/no stress, interesting, great insurance) that I’m game for taking a more aggressive approach, allowing the entire kitchen sink to be thrown at it.
A local clinical trial is underway for ADT+ARSI+PARP where the PARP is the variable, but it is only available for patients that have had no BCR treatment after RALP, so we are looking at my situation as an extension of sorts of this trial.
I’d welcome any additional thoughts or information (in this thread or links to others)
Thank you!