What chemo did you have with stage 4 pancreatic cancer?

Hello Beachdog, thanks for all the information! I am at the end of the last treatment and hardly normal feeling but tomorrow I get a second dose. I think I just forgot how bad the folfirinox treatment was. Because people have said this is not as bad. I have heard that these treatment stop working as well with time. Your advise is good. I have already wondered if side effects are worth it but will have to see if it buys more time. My oncologist said if it stops helping we will switch. It just robs you of feeling like you can do much of anything. I had bad headaches raw mouth and lips, and just worse fatigue ever. Did your wife switch to another treatment after this chemo? thanks for your time in answering it helps me to know more about what other's have experienced. Thanks Sasha

My wife has been on onivyde/5fu since January. Every other week. First 6 treatments were getting excellent results, no new mets, no growth in suspect sites and huge drops in CA19-9 every treatment. But the side effects kept her bedridden from treatment to treatment and after the 6th treatment she took a 6 week break to recuperate. The CA19-9 shot up while she was out of treatment. She's had 4 treatments since resuming and the CA19-9 decreases haven't been substantial. She'll have another scan in 2 weeks to see if the after-break treatments are keeping the mets at bay despite the discouraging CA19-9 readings. Elsewhere I've written that the next possible plan might be for a clinical trial which is not specifically for pancan but addresses a mutation that her tumor expresses.

I’d like to know too. I keep asking for what stage and have gotten nothing! My husband is on his way down. I wish there was some kind of time line sorta. Just a wish list on my part.

Most patients don’t understand the significance of staging and assume the worst when told it is a later stage. All that does is create undue fear, anxiety and stress- not needed when dealing with a tough cancer. Staging is what the oncologist needs to know so he/she can determine the best course of treatment.

I did not ask what my diagnosis, prognosis or life span was estimated to be. I focused instead on
finding the most qualified NCI designated medical center in cancer care with a pancreas program and a multidisciplinary team highly skilled in treating it in my region. Having a medical research background, I knew I was going to be in the fight of my life. I was not interested in palliative. My goal was long-term survival and I made it clear that was my intention and would take the most aggressive chemotherapy to achieve my goal.

I did 24 cycles of the original higher strength of Folfixinox in groups of six cycles. It was followed with six “resting” cycles of 5-FU and Leucovorin. This was repeated over the course of 24 months. After the first cycle of six, I was genetically tested and a mutation driving my cancer was discovered. This allowed me to focus on searching for an appropriate clinical trial targeting the specific mutation. After the standard of care treatment was completed, a suitable clinical trial had become available a few months earlier and I became the first patient to enroll.

I had a complete response to the drug. The aggressive SoC chemo plus the addition of the clinical trial resulted in surviving stage IV pancreatic cancer. I just celebrated the 10 year anniversary of my Whipple surgery which despite having it, went on to having metastatic disease to the liver. Every year I celebrate each anniversary IRB all the members of the multidisciplinary team that successfully treated me. And every year I thank them for never having told me what my stage was, my prognosis and my expected lifespan. They saved themselves a lot of embarrassment my keeping their mouths shut.

@stageivsurvivor What was your tumor's mutation? What was your clinical trial treatment composed of?