what's next?

Posted by sheridanb @sheridanb, 5 days ago

Folfirinox showed resistance after about 9 or 10 months. Now gem/abrax may be going the same route as CA19-9 numbers have gone from 300 to 800 in the last couple months. Scans are happening next week.... MRI's on 3 parts of his back, and brain, and CT on full body. I am aware the scan results are more important than the CA19-9 numbers... but I'm worried for my husband. Last time the numbers went up the scans did show new growth.
So, what options are next. Can he go back to folfirinox? Or are there other chemo drugs for pancan? I really hate to think about the folfirinox as it was really, really, really hard on him... losing weight and turned into a zombi. Dizziness and severe neuropathy have been a big issue with gem/abrax, but at least he can hold a conversation.
Yes, I'm concerned. Thanks.

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Nalirifox was approved by the FDA last year. It's basically a reformulation of Folfirinox using a newer version of irinotecan called Onivyde (liposomal irinotecan).
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-irinotecan-liposome-first-line-treatment-metastatic-pancreatic-adenocarcinoma
I've had two oncologists recommend this as a possible next step if I develop resistance to Gem+Abrax+Cisplatin, but I don't think I'll ever go that route unless a head-to-head study shows Nalirifox being vastly superior to Folfirinox. I only had a so-so response to Folfirinox before my Whipple, and my gut feeling is that changing one ingredient won't buy me a response worth all the side effects. Everyone is different and I have zero medical training, but that's my thought process.

Outside of those, you're basically looking at clinical trials, or previously approved drugs used off-label. PARP inhibitors have been approved for other cancers, and have tested well in pancreatic patients with BRCA1, BRCA2, and PALB mutations. Olaparib (Lynparza) is one PARP inhibitor with approval for other cancers, making it "legal" for off-label use in pancreatic cancer (as I understand the law).

PARP inhibitors may eventually prove effective in patients with other mutations like ATM, but not yet in large studies. However, I did find one encouraging case report of a gastric cancer patient with an ATM mutation treated with a combination therapy of Olaparib added to nivolumab with fluorouracil and docetaxel. After accumulation of side effects, patient was transitioned to Olaparib monotherapy and continues to do well.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10953106/
You're going to need an oncologist willing to think outside the box, go out on a limb, etc... I hope you do and I wish you well!

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@markymarkfl

Nalirifox was approved by the FDA last year. It's basically a reformulation of Folfirinox using a newer version of irinotecan called Onivyde (liposomal irinotecan).
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-irinotecan-liposome-first-line-treatment-metastatic-pancreatic-adenocarcinoma
I've had two oncologists recommend this as a possible next step if I develop resistance to Gem+Abrax+Cisplatin, but I don't think I'll ever go that route unless a head-to-head study shows Nalirifox being vastly superior to Folfirinox. I only had a so-so response to Folfirinox before my Whipple, and my gut feeling is that changing one ingredient won't buy me a response worth all the side effects. Everyone is different and I have zero medical training, but that's my thought process.

Outside of those, you're basically looking at clinical trials, or previously approved drugs used off-label. PARP inhibitors have been approved for other cancers, and have tested well in pancreatic patients with BRCA1, BRCA2, and PALB mutations. Olaparib (Lynparza) is one PARP inhibitor with approval for other cancers, making it "legal" for off-label use in pancreatic cancer (as I understand the law).

PARP inhibitors may eventually prove effective in patients with other mutations like ATM, but not yet in large studies. However, I did find one encouraging case report of a gastric cancer patient with an ATM mutation treated with a combination therapy of Olaparib added to nivolumab with fluorouracil and docetaxel. After accumulation of side effects, patient was transitioned to Olaparib monotherapy and continues to do well.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10953106/
You're going to need an oncologist willing to think outside the box, go out on a limb, etc... I hope you do and I wish you well!

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markymarkfl, thank you for sharing your knowledge. I appreciate you taking the time to do this. Sheri

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@sheridanb

markymarkfl, thank you for sharing your knowledge. I appreciate you taking the time to do this. Sheri

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Look for a clinical trial! It takes a lot of time to navigate through the complexities and contacting numerous sites but I’ve been on one for 6 months and just got told ‘ no evidence of cancer’ - !!

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@plum1

Look for a clinical trial! It takes a lot of time to navigate through the complexities and contacting numerous sites but I’ve been on one for 6 months and just got told ‘ no evidence of cancer’ - !!

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Where do you start? If you don't mind my asking what gene mutation are you in a trial for?

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@chrkuh

Where do you start? If you don't mind my asking what gene mutation are you in a trial for?

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Start with clinical trials.gov and search for pancreatic cancer. I have the G12D mutation and am in an inhibitor trial

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@plum1

Start with clinical trials.gov and search for pancreatic cancer. I have the G12D mutation and am in an inhibitor trial

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Also ask your oncologist

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