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@stageivsurvivor

FOLFIRINOX is a first-line regimen of 4 components.
FOL = Folinic Acid which is a reduced form of the vitamin folic acid and the brand name is Leucovorin calcium.
F = 5-Fluorouricil. It is the most toxic of the agents and infused slowly over 46 hours.
IRIN= Irinotecan which affects fast growing cells in the GI tract and causes diarrhea. The brand name is Camptosar.
OX =Oxaliplatin also known as Eloxatin. It is neurotoxic to peripheral nerves, e.g., hands, fingers, feet and toes.

Some oncologists May dose their patients of six cycles followed by just 5-FU and Leucovorin. The irinotecan and oxaliplatin are removed for the next six cycles. This is to give the body a rest and recover. I was dosed using this alternate method which reduced the neuropathy and the symptoms I did have from 24 cycles of Folfirinox and eventually resolved after a number of years. The alternate cycles of 5-FU/Leucovorin totaled 22 making for a combined total of 46. End result of the additional chemo beyond the standard of care 12 cycles was NED. Minimal residual disease (MRD) was destroyed. What remained of the significantly shrunken tumors was scar tissue which eventually was cleared from the liver by immune system cells.

At 10 years I was told by several oncologists I achieved cure but to remain vigilant and continue scans as those with a remaining pancreas have a propensity to develop a new primary tumor. When you hear of patients that developed pancreatic cancer again after seven years of more, that is from a new primary tumor. I know of two individuals that after reaching five years, stopped with surveillance. Both at 10 years from initial diagnosis and Whipple surgery developed new primary tumors in the remaining pancreas and succumbed to it. This is why I continue getting MRI’s twice a year and ctDNA which is extremely sensitive and eliminates radiation from a CT.

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Replies to "FOLFIRINOX is a first-line regimen of 4 components. FOL = Folinic Acid which is a reduced..."

I appreciate your comments about continue surveillance. I had ovarian cancer in 2007 and have continued annual physical exams and tumor marker blood test, although I suppose after nearly 16 years, you could say I'm cured. It was made pretty clear to me, though, that I should never assume I'm cured and should stay vigilant. I am convinced that helped us spot the pancreatic cancer earlier than is typical; I'm kind of hyperaware of things that aren't "right." Also, thanks for sharing the details on your chemo regimen. I haven't started yet; the first round of modified Folfirinox is scheduled for Monday 4/24. But I have been concerned about the peripheral and cold neuropathy associated with oxaliplatin. I had a little neuropathy in my hands with the carboplatin in 2007, but I have to admit the cold neuropathy really freaks me out. So I need to make a note about the alternative regimen in case I need to inquire later.

Can you explain what ctDNA is? I am awaiting results from the blood test Signatere and aware it could provide a false positive.(not proven for pancreas cancer yet) If it provides a positive, I need to make a decision on what next, even though I am NED now.