First, let me wish you a Happy New Year filled with total recovery and no worries.
My story was different, but I also had rising CA 19 9 levels without concrete evidence of recurrence. After having surgery 2 years ago..also Jan 12, I was cancer free. Then I had 6 months of gemcitabine and abraxane for another 6 months. I was cancer free for 20 months. CA 19 9 had started to rise, and CT scan showed an "area" of concern with several lymph nodes. Had a follow up MRI, which did not show that area and showed lymph nodes had shrunken. Was scheduled for an EUS...endoscopic ultrasound..which found no lymph nodes and no area of concern. At that point my CA 19 9 was over 400. The physician told me my pancreas looked healthy. 8 weeks later I had another CT, which showed lymph nodes and a mass on my pancreas that was about 2 inches x 1 inch. I was then put on 5FU..a modified version of Folfirinox. I am on a reduced dosage, and also have opted not to take oxaliplatin. Just to go back a bit, prior to the gemcidibine and abraxane , I was given Folfirinox and reacted terribly to it. My oncologist at the time never told me they could adjust the dose.
I had almost immediate vomiting and a fever. So, they put me on the gemcidibine combo.
With the recent "recurrence" 3 months ago, I am now on 5FU. Have had 7 infusions.
Lymph nodes have reduced and CA 19 9 has fallen by more than half.
So, the question about folfirinox being worse...yes, I find it worse than gemcitabine and abraxane. But, I havent really lost much hair on it. The nausea from it is much worse than Gemcitabine combo, and i may be sick for 5 days. Also experiencing muscle and joint pain and back pain. Fatique is not too bad.
So, it's all confusing. I am so grateful that numbers have fallen and lymph nodes have shrunken. After next infusion, I have a new CT scan and we'll see what has shrunken even more.
Keep visualizing being healthy and strong and in complete remission with no evidence of disease.! I'm sorry that this may not be very helpful to you, but I hope it gives you some peace and reassurance to know that we are surviving and are very capable of thriving.
Best wishes to you. I'll be thinking of you.