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I get about not being a fan of randomized. I also chose not to take that path. Have you had any recent scans to find any new growths? This time pain on my right side was an indicator before my CA19-9 started rising sharply. As you well know, you have to know where new growth is, if any, to know your most effective line of treatment. CT was done, but drs couldn’t tell what was inflammation from my past radiation or what was new, so they ordered PET and laid the 2 images on top of each other to get a result. I asked another dr for MRI; so we had all three and just prior I got angiogram CT of my lungs as a follow up on a benign nodule I had.
New growth in liver again, though they said they cant Gus one it’s not anywhere else based on my high CA19-9 they said. I wish they would do ERCP, but they don’t think it’s necessary. I’ve decided to the Naliri. Have you researched it yet? I hope it’s an option for you. I’m very curious what you said about PARP to “nibble” away at the ATM - that is new information for me. As always, my friend, God’s guidance in decision making of your next step.

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Replies to "I get about not being a fan of randomized. I also chose not to take that..."

I definitely have some small new tumors on the MRI 2 weeks ago, and one in the upper right abdominal quadrant that has grown quite a bit since the February MRI.

PARP inhibitors have been approved in pancreatic cancer patients with BRCA1, BRCA, and PALB mutations. These are related to DNA Damage Repair/Response (DDR), which they share with ATM, but not exactly (single-strand breaks vs double-strand breaks, iirc). Approval for the first three was based on a study (sorry, no link today) that found PARPi effective for them, but not for ATM. Nonetheless, that approval at least allows it to be tried off-label.

Although studies like that mainly report on a full population's response, you rarely know how an individual patient responded; everyone is different, and there could always be an outlier who responds well. I was encouraged when I read this report: https://pmc.ncbi.nlm.nih.gov/articles/PMC10953106/ about a germline ATM-mutated patient with gastric (stomach, not pancreas) cancer who received treatment with Olaparib. He responded quite well, and I followed up to confirm the patient is still alive. He eventually lost his response to Olaparib, so they added Lonsurf, and is still doing well with mild elevation of CA19-9 and small peritoneal met recurrence.

I haven't done much research on Naliri, but it's basically just a new formulation of irinotecan. My understanding is that it has a (lipid?) layer that keeps it from being broken down in the body during chemo, so that a higher concentration of it goes into the tumor cells.

Since irinotecan is one of the ingredients in Folfirinox, which didn't seem to do much in my pre-Whipple neoadjuvant therapy, I remain a little skeptical about it. Coupling that with the cost, the diarrhea reports, the 46-hour 5FU takehome pump that usually accompanies it, and the potential to disqualify me from other trials has led me to defer it until other options are exhausted.

As noted above, everyone is different, and I hope you are one of the exceptional responders!