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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Clare0282
Posts: 3
Joined: Tue Sep 01, 2020 3:56 pm

Reaction to Folfirinox, reassurance needed please.

Postby Clare0282 » Tue Sep 08, 2020 9:53 pm

Hello everyone,

I'm so glad to have found this forum, it seems like a very supportive place to be when you or a loved one is going through pancreatic cancer.

My mum is 74, super fit and active and puts me (her daughter, 38) to shame with how energetic and healthy she is. After suffering with jaundice in early July, she was diagnosed with inoperable pancreatic cancer as it occludes major blood vessels. The tumour is about 7cm but it hasn't spread to her lymph nodes. She had a stent fitted which worked wonders for her jaundice and shes been taking creon with every meal. She had 2 CT scans, 5 weeks apart and we were very happy to find out it hadn't grown in that time. My mum has just started on Folfirinox and had her first cycle less than a week ago. On the day of her chemo she was sick and had diarrhoea on two separate occasions. Over the next 4 days she's felt very weak, no appetite and some pain in her guts and back. This was all to be expected to some degree, but she was able to eat very small amounts. Today (day 5) she's really suffered. Very bad deep pain in her guts, nausea and was sick once, took a strong anti-sickness tablet and hasn't been sick again, but her gut pain has been particularly bad and she's been in bed all day. She's not managed to eat anything since breakfast, that didn't stay down anyway. She's managed to sip water and lucozade sport throughout the day. Her pulse is very high for her (102) but her blood pressure is ok. She doesn't have a temperature either.

As this is all very new and quite scary for us, I was hoping for some reassurance that this is considered "normal" after having Folfirinox? Or should I be quite worried and be taking her to hospital? I have heard that day 3-5 after the chemo has stopped can be particularly bad, so this would be day 3 for my mum. I'm worried if this carries on for another day or so, she'll not have anything in her stomach and she's already lost weight. At what point would we need to consider taking her to hospital? Can anyone say that this will pass and there are better days ahead? Any suggestions or advice would be much appreciated.

Thank you all very much xxx

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Reaction to Folfirinox, reassurance needed please.

Postby PCUK Nurse Jeni » Wed Sep 09, 2020 11:11 am

Hi Clare,

Thank you for your post on the forum. I am sorry to hear about your mum.

I can imagine that this is new ground for your mum and yourself, so quite a lot to take in.

Clare, I will reply to you directly as there are quite a few queries here and easier to address in an email.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Clare0282
Posts: 3
Joined: Tue Sep 01, 2020 3:56 pm

Re: Reaction to Folfirinox, reassurance needed please.

Postby Clare0282 » Wed Sep 09, 2020 1:37 pm

Hi Jeni,

Thank you so much for replying. Can I check where you be emailing me please? Do you have my gmail address?

Thank you

Clare

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Reaction to Folfirinox, reassurance needed please.

Postby PCUK Nurse Jeni » Wed Sep 09, 2020 4:02 pm

Hi Clare,

I have emailed you now.

KR,

Jeni.