Changing chemo regimen after 4 cycles of Folfirinox?

Posted by wjk @wjk, Jul 28, 2023

I'm a 74 y.o. guy diagnosed with Adenocarcinoma at the head of my pancreas (Stage 1b). My initial diagnosis and first round of Folfirinox occurred 2 months ago at Mayo Clinic - Rochester. I returned home here in Alaska where I expected to receive an additional 7-11 cycles of chemo before returning to Rochester for possible radio/chemo treatments for 3-4 weeks, followed by laparoscopic Whipple surgery after a month long break.

My reaction to Folfirinox infusions became increasingly severe, so much so that the decision was made to discontinue Folfirinox treatment during my 4th infusion 3 days ago and switch to a new chemo regime (presumedly Gemcitabine and Abraxane).

Has anyone else found themselves in a similar situation? If so, might you share some of your experience? Thanks.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Another option is to reduce the dosage from 100% Maximum Tolerable Dose to 75% or 80% Maximum Tolerable dosage. When my husband's oncologist did this he tolerated Folfironox ALOT better.

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Not sure of your actual symptoms but guessing they want to stop due to your chemistry or hematology. I did 12 rounds 2022 with extra fluids and Neulasta shot when pump was pulled. My platelets were the constant concern and I did get infusions 2 or 3 times. It worked miraculously for me. Perhaps a good match for KRAS mutation? I am also surviving a stage IV diagnosis.
Just now trying GEMZAR for a small reoccurrence in my liver. We will see if it works as well.
Perhaps there is a center of excellence closer to make your travel easier? Arizona, California, Madison, Wis; Colorado?

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@beths77

Another option is to reduce the dosage from 100% Maximum Tolerable Dose to 75% or 80% Maximum Tolerable dosage. When my husband's oncologist did this he tolerated Folfironox ALOT better.

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beths77 - Another possible way to skin the cat. Thanks for sharing your husband's experience.

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@gamaryanne

Not sure of your actual symptoms but guessing they want to stop due to your chemistry or hematology. I did 12 rounds 2022 with extra fluids and Neulasta shot when pump was pulled. My platelets were the constant concern and I did get infusions 2 or 3 times. It worked miraculously for me. Perhaps a good match for KRAS mutation? I am also surviving a stage IV diagnosis.
Just now trying GEMZAR for a small reoccurrence in my liver. We will see if it works as well.
Perhaps there is a center of excellence closer to make your travel easier? Arizona, California, Madison, Wis; Colorado?

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gamaryanne - Though experiencing increasingly severe neuropathologic side-effects from Oxaliplatin, I believe the primary reason for discontinuance of Folfirinox is the growing intensity of allergic/anaphylactic-like at the end of every infusion, Those symptoms include tongue thickening, extreme difficulty/inability to swallow, inability to pronounce/speak clearly, hyper-salivation, diminished cognition, difficulty ambulating, etc. Last time around the infusion team had to intervene with several meds, which I think included IV Atropine, Benadryl, steroids, and Pepcid. The PA in the room had Epinephrine on hand if the other meds weren't effective enough. I've had similar reactions near the end of all four infusions, but this was the worst.

Regarding platelets. Mine are within normal limits and are not a concern at this time.

Thanks for your input. Best wishes to you.

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@lilliejane2

Hello. I was scheduled to have Folfirinox 6 weeks after I had the Whipple procedure - stage 3 pancreatic adenocarcinoma. I had 1
Folfirinox treatment in the hospital but my reaction to it was so severe that I wasn't even able to complete the 2 days at home with it after the infusion at the hospital. I had terrible vomiting and a fever right away. I refused to take anymore and the oncologist switched me to gemcitabine and abraxane. which I tolerated for the 6 months that I was on it.
Since then. I have a new oncologist who told me they could have adjusted
The folfirinox cocktail, but my original oncologist never even mentioned that. The gemcidibine/abraxane wasn't too bad until about the last 6 weeks when the nausea became worse and I had a fever one day per week. Also, I could only do the chemo every other week because it really affected my
white blood cells.
I dont know if this helps you, but I know what you're going through.
God bless.

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Yes, the gemcidibine/
abraxane made my white cells dip below normal, so I was given it 2 times
a month. I never had to have neulasta.

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@wjk

gamaryanne - Though experiencing increasingly severe neuropathologic side-effects from Oxaliplatin, I believe the primary reason for discontinuance of Folfirinox is the growing intensity of allergic/anaphylactic-like at the end of every infusion, Those symptoms include tongue thickening, extreme difficulty/inability to swallow, inability to pronounce/speak clearly, hyper-salivation, diminished cognition, difficulty ambulating, etc. Last time around the infusion team had to intervene with several meds, which I think included IV Atropine, Benadryl, steroids, and Pepcid. The PA in the room had Epinephrine on hand if the other meds weren't effective enough. I've had similar reactions near the end of all four infusions, but this was the worst.

Regarding platelets. Mine are within normal limits and are not a concern at this time.

Thanks for your input. Best wishes to you.

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Oh my! Absolutely they should stop this. Terrible reaction. Hang in there. Other options are available.
Bless your heart. Try and at least eat healthy with various types of protein and lots of water until they get this sorted out.

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I think they can "generally" remove any element from your cocktail to address symptoms, they just can't add anything unapproved. But in some cases there is a synergy between two ingredients of the cocktail, and reducing the dose of one could diminish the effectiveness of another, so that has to be weighed.

In my 12 rounds of pre-Whipple Folfirinox, we reduced the Oxaliplatin by somewhere from 10%-25% during the last four to reduce the peripheral neuropathy. I also had to take an antihistamine (Zyrtec) with most of infusions to prevent complete sinus drainage. I had a little bit of the tongue acting like a dead appendage messing with my speech, and occasional swallowing difficulty a few days after treatment, but not permanent.

Since post-Whipple recurrence, I've had 14 biweekly infusions of Abraxane + Gemcitabine + Cisplatin. Docs believe the Cisplatin is a big helper with my ATM mutation. Aside from total hair loss and neuropathy comparable to the Folfirinox, I've had a much better reaction (CA19-9 reduction) on this cocktail (AGC) than I did on the big F. I wonder where I'd be now if we had started me there before the Whipple...

For both chemo regiments, I added two Imodium AD caplets the night before treatment and one the morning of treatment to help minimize the need for potty breaks, and it has worked very well.

Mayo has some lodging assistance options (American Cancer Society Hope Lodge at several locations, and some smaller independent ones like the Gabriel House in Jacksonville) that are nice and affordable if you need an extended stay,

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@markymarkfl

I think they can "generally" remove any element from your cocktail to address symptoms, they just can't add anything unapproved. But in some cases there is a synergy between two ingredients of the cocktail, and reducing the dose of one could diminish the effectiveness of another, so that has to be weighed.

In my 12 rounds of pre-Whipple Folfirinox, we reduced the Oxaliplatin by somewhere from 10%-25% during the last four to reduce the peripheral neuropathy. I also had to take an antihistamine (Zyrtec) with most of infusions to prevent complete sinus drainage. I had a little bit of the tongue acting like a dead appendage messing with my speech, and occasional swallowing difficulty a few days after treatment, but not permanent.

Since post-Whipple recurrence, I've had 14 biweekly infusions of Abraxane + Gemcitabine + Cisplatin. Docs believe the Cisplatin is a big helper with my ATM mutation. Aside from total hair loss and neuropathy comparable to the Folfirinox, I've had a much better reaction (CA19-9 reduction) on this cocktail (AGC) than I did on the big F. I wonder where I'd be now if we had started me there before the Whipple...

For both chemo regiments, I added two Imodium AD caplets the night before treatment and one the morning of treatment to help minimize the need for potty breaks, and it has worked very well.

Mayo has some lodging assistance options (American Cancer Society Hope Lodge at several locations, and some smaller independent ones like the Gabriel House in Jacksonville) that are nice and affordable if you need an extended stay,

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I try to post one time on each thread regarding the advisability of relocating to the center of excellence - they are significantly more capable at addressing this specific cancer, can far more quickly assess your response, and maintain a much closer eye on your specific dosing and chemical mixtures - their shorter and more knowledgeable response time to your issues is key.

I recognize this is difficult and takes one away from family, but believe it is far more likely to result in better outcomes.

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@wjk, how are you doing? How were your reactions to treatment resolved? Did you change protocols?

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@colleenyoung

@wjk, how are you doing? How were your reactions to treatment resolved? Did you change protocols?

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Thanks for asking. The day after I last made a comment on this thread I was admitted to a hospital here in Alaska following blood draws and a CT scan at my oncology office. My biliary stent was obstructed and liver enzymes were elevated... among other things. I had an ERCP that evening addressing the stent obstruction caused by tumor ingrowth. A covered metal was placed on top of the uncovered mesh stent. Blood cultures were positive for a gram negative bacteria, resulting in an additional three days of hospitalization. The blood infection is being treated with an antibiotic (initially IV and now orally) that will continue for another week. There will be no further chemo until the course of antibiotics is completed next week. At that time (in 7 days) I'm scheduled to begin the Gemcitabine/Abraxane regimen.
In the meantime I've requested a second opinion from my Mayo oncologist (Alberts) and have informed my Mayo surgeon (Kendrick) of my situation so I can best plan next steps. I'm wondering if there may be a better alternative(s) or simply to go ahead with the current plan to substitute one drug regimen for another. One possible example as an alternative is to go go straight to radiation therapy at Mayo an skip further neo-adjuvant chemo, but perhaps that would be ill advised. My CA19.9 levels have been trending downward (641 in late May to 289 in late July) and tumor size has shrunk by about 16% after 4 Folfirinox infusions. (Current mass size 2.9 x 1.9 x 2.5 cm).

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