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Folfirinox..how many rounds?

Posted: Sat Sep 26, 2020 10:50 am
by taoofpooh
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.

Re: Folfirinox..how many rounds?

Posted: Fri Oct 02, 2020 12:14 pm
by PCUK Nurse Nicola
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

Re: Folfirinox..how many rounds?

Posted: Fri Oct 09, 2020 1:23 am
by Marta
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.

Re: Folfirinox..how many rounds?

Posted: Sat Oct 10, 2020 12:43 pm
by taoofpooh
Thank you Marta. It is great to hear you have done so well on the chemo.
Paul.

Re: Folfirinox..how many rounds?

Posted: Mon Oct 12, 2020 9:20 am
by RoyBoy
Paul, I cannot help with chemo but sending you extra strength and good luck to keep fighting 👍

Re: Folfirinox..how many rounds?

Posted: Sat Oct 31, 2020 5:03 pm
by Vasil
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.

Re: Folfirinox..how many rounds?

Posted: Mon Nov 09, 2020 12:36 pm
by taoofpooh
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.
Paul.

Re: Folfirinox..how many rounds?

Posted: Wed Nov 11, 2020 2:29 pm
by Theresa Upton
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.