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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taoofpooh
Posts: 8
Joined: Tue Mar 05, 2019 11:12 am

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
Posts: 26
Joined: Tue Sep 04, 2018 9:40 am

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.
Thanks,

Nicci

Nicci Murphy
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK

Marta
Posts: 3
Joined: Wed Jul 01, 2020 12:46 am

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.

taoofpooh
Posts: 8
Joined: Tue Mar 05, 2019 11:12 am

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.
Paul.

RoyBoy
Posts: 34
Joined: Tue May 20, 2014 10:42 am

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 👍