A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Folfirinox..how many rounds?

Postby taoofpooh » Sat Sep 26, 2020 10:50 am

Hello everyone.

I would like to hear from anyone that has completed 12 rounds of folfirinox then at some point later had further rounds. Or from anyone that has completed 12 rounds then requested more but been refused.
I completed 12 rounds in Nov 19, have had no treatment since and am now requesting more fol from my Oncologist who seems quite reluctant to offer it, citing increased neuropathy and chances of sepsis as a risk ( I have inoperable PC). I have stated I am willing to take my chances.
Any advice from your experience would be grateful.
Thanks everyone.

PCUK Nurse Nicola
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Re: Folfirinox..how many rounds?

Postby PCUK Nurse Nicola » Fri Oct 02, 2020 12:14 pm

Hi taoofpooh,

It’s Nicci, one of the support line nurses here. Thank you for your post, I’m sorry you haven’t had any responses as yet from other forum users but hopefully you will soon.
Please do feel free to contact us also on the support line to talk this through in more detail. Our support line is open Monday-Friday 10am-4pm 0808 801 0707.


Nicci Murphy
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK

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Re: Folfirinox..how many rounds?

Postby Marta » Fri Oct 09, 2020 1:23 am

Hi! I had about 46? Rounds of folfirinox. No, I am not joking. Every patient is of course different and this was thoroughly discussed with my medical team. I was diagnosed with metastasis after my surgery in 2018 and got almost two full years on it with some blips due to low blood counts, a CMV infection and one diarrea bout (and a couple of holidays). I got 10 rounds, then dichted off oxaliplatin due to the peripheral neuropathy but continued with the rest of the treatment for over 10 months, progressed slightly, got another 10 rounds with oxaliplatin, stopped it again at 10 rounds due to neuropathy, got three months without it and am now switching to Gem+abraxane.
The points my doctors considered to make the decision was the response I had and the toxicity (minimal), so this Is decided on patients characteristics and might vary a lot from one person to the other. I am not in any way giving medical advice, but in my particular case that option was fecommended by my doctors and I accepted. I hope this helps and best of luck with tour treatment.

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Re: Folfirinox..how many rounds?

Postby taoofpooh » Sat Oct 10, 2020 12:43 pm

Thank you Marta. It is great to hear you have done so well on the chemo.

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Re: Folfirinox..how many rounds?

Postby RoyBoy » Mon Oct 12, 2020 9:20 am

Paul, I cannot help with chemo but sending you extra strength and good luck to keep fighting 👍

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Re: Folfirinox..how many rounds?

Postby Vasil » Sat Oct 31, 2020 5:03 pm

Dear Paul, may I ask you something. What comes after the 12th round? A break or one has to continue on the same regimen. I am asking because my father is on this treatment, done 7 rounds so far and a scan has been scheduled after finishing the whole cycle.

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Re: Folfirinox..how many rounds?

Postby taoofpooh » Mon Nov 09, 2020 12:36 pm

Hi Vasil.
I think each case is different, but from what I can gather the Oncologist have a 'wait and see' approach. I finished my 12 rounds in Nov 2019 and have had CT scans every 3 months. The Oncologist feels more Folfirinox would be more harmful than beneficial due to its toxicity.
Hope this helps.

Theresa Upton
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Re: Folfirinox..how many rounds?

Postby Theresa Upton » Wed Nov 11, 2020 2:29 pm

Hi. I was diagnosed in Sept 2018 and have mets in my liver. I did 19 rounds of folfirinox, a lot of it was at 80% with the oxaliplatin being reduced to 60%. I enjoyed a 14 month chemo break but my last scan showed that the tumour in my pancreas has grown very slightly. Tomorrow I start on folfirinox again, we are looking at 6 more infusions followed by a scan and we will go from there.

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Re: Folfirinox..how many rounds?

Postby faylemv » Mon Mar 22, 2021 9:40 am

I completed 12 gruelling rounds in February and my oncologist said because I’ve responded well to the treatment that he may consider giving me more further down the road

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Re: Folfirinox..how many rounds?

Postby JayneP » Tue Mar 23, 2021 10:27 am

I finished 12 rounds on 9th February 2021. I have inoperable PC. At the halfway scan my tumour had shrunk by about a third. It measured 2.7x2.4 cm. On my final scan it had shrunk a bit more but not given the exact measurements and the oncologist said it wasn’t written down - a bit strange I thought.
I had my CT scan results and way forward discussion with my oncologist 2 weeks ago, and my next course of treatment is Radiotherapy with chemotherapy (chemo either through pump/PICC line or tablet form).
5 weeks of Radiotherapy Monday to Friday. My break is only really the waiting time between the last treatment of FOLFIRINOX and setting up the next.
Best wishes