← Return to Husband had Whipple surgery and chemo: He's uncomfortable

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@stageivsurvivor

The number of rounds for Folfirinox being 12 is based on a committee of pancreatic oncologists through consensus that it was the maximum number of cycles the majority of patients could tolerate regarding side effects (nausea, vomiting, peripheral neuropathy, cold sensitivity) and achieve NED (No Evidence of Disease). That information comes from two of the pioneering oncologists that conducted clinical trials of Folfirinox.

The definition of NED is knocking down the disease so low that it can not be detected by conventional imaging by CT, MRI or PET. There can be micro-metastatic disease with is too small to be detected and is referred to as MRD (minimal residual disease). It can be micro lesions or circulating tumor cells. As long as one’s immune system remains robust, the MRD is held in check. If the immune system is challenged and weakens, disease progression results. Pancreatic cancer is noted for a high rate of disease progression after Whipple resection, even in some diagnosed with stage I disease.

I ended up having stage IV disease after my Whipple and did far beyond the 12 recommended cycles. I was keenly aware of MRD and was focused on completely eliminating it. Fortunately I tolerated a higher dose of Folfirinox (unmodified version used between 2011-2018). I achieved NED after 24 cycles of Folfirinox and at year 10 was informed I am considered cured of any metastatic disease. I just reached 11 years post Whipple.

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Replies to "The number of rounds for Folfirinox being 12 is based on a committee of pancreatic oncologists..."

@stageivsurvivor did you keep having which scan until NED was declared? What is best way to boost immune system? And today, will oncologists prescribe more than 12 Floforinox cycles or do they stop? Do you know if Flofori is as effective? I see people getting Folfori - not sure if that’s because of a shortage or the neuropathy factor of the oxiplatin, thoughts? And had your metastatic disease affected lymph nodes or had perineural invasion?

Thank you so much for all the helpful information. Congratulations on 11 years. It is reassuring to hear positive outcomes once in awhile. I pray my husband can hang in for the 12 cycles. They really are hard on his body and he is skin and bones already. Did you find food a struggle during chemo and how long did it take you to bounce back when off treatment? Any helpful ideas would be greatly appreciated. Not looking forward to #6 on Tuesday. God bless you and your loved ones.