My Mum is starting Folfirinox

Hello BlueR3fc4f0 

I am Brian one of the Community Champions here on the Online Community. I have just noticed your post hasn't had any replies. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the group and I hope seen and replied to by other members of the Pancreatic group.

I do hope you get some answers as it must be a worry with your mum living abroad.

Best wishes - Brian.

Hello BlueR3fc4f0

Your mother is very fortunate to have your support.

i had six cycles of FOLFIRINOX before a Whipple procedure and am happy to share my experience.  However I think it can be different for each person and in my experience some cycles were harder than others.

i was generally OK and had good levels of energy, food intake, etc from day 1 to day 6.  I mainly attribute this to the medication that you take for the first few days especially dexamethasone.  For the next few days for the first two cycles I had fatigue and a very upset stomach.  I did spend day 9 or 10 mainly in bed and also developed a fever.  After this I recovered in time for the next cycle.

from cycle 3 onwards I had very few symptoms related to chemotherapy.  I did however become jaundiced due to my biliary stent migrating.  This was because the tumour had softened and shrunk in size and I had a pause in chemo because of this.  This was good news which meant I was able to have surgery 5 weeks ago.  I’m recovering well and gaining weight.

It is therefore difficult to say when your mum may need the most help.  Her response to cycle 1 may be a good predictor of how she feels later?

good luck to both of you.  Pancreatic cancer and its treatment do take a lot out of both the patient and their carers but in my experience the oncology and surgical teams along with physiotherapists and dietitians keep a very close eye on you and help to keep you as well as possible.  

Thank you Brian, that is so very kind!

Thank you for your reply foodlover! Thank you for taking the time to write after your operation, good to hear that you are recovering and gaining weight. Love your username ;-) My mum said "but food is my favourite meal" before the operation when she had not been able to eat much at all for a little while and she is now slowly working out what she can eat well and enjoy again. So helpful to hear your experience of the chemo and the days you were most symptomatic. Yes it is a difficult journey keeping a balance of hope and being realistic too.