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. 

How are you doing Foodlover I hope you are still recovering from your surgery and getting the hang of the different way of eating (my mum found that quite a challenge but getting there). My mum has started Folfirinox this week and it has been hard with vomiting from the second night onwards despite all the meds and she is back in hospital to manage. The oncology nurses are very supportive and I think are already adapting the meds to manage side effects for the next cycle. 

My husband was diagnosed with a rare form of pancreatic cancer 12 months ago with a predicted 6 month life expectancy. He did such months of folfirinox which reduced his tumours. In honesty it was extremely harsh- for everyone. 

The steroids prescribed for the first five days or so of every cycle  kept him relatively lively and made him eat but the side effects the were generally extremely debilitating. 

Over the first couple of days of each cycle his cold hypersensitivity was intense. He couldn't touch anything in the house, not even a door or cupboard handle. He felt cold to his bones and had constant cold induced hiccups. It was painful and made him extremely miserable   It lessened throughout the cycle but never went. It has been replaced with neuropathy now so he can't feel his hands and feet. As the cycles progressed he became more forgiving dadverse, not because he felt sick or anything but because all food tasted revolting and things smelt extremely unpleasant. He honestly needed a lot of support. He's since gone through a rest phase due to toxicity, gem cap cycles, onivyde and 5fu/lv too; they haven't worked. He's starting gemcitabine nabpaclitaxel today.

We got him every type of hat, face and neck protector, gloves, thermals, you name it, it didn't really help- although maybe it did, if recommend buying as many heated, thermal things as possible. Rechargeable electric hand heaters and alpaca socks were good to have. Wind cheaters from ski specialists were necessary for today and neck protection. If get special ski ones if you can add they are warmest .

The side effects meant he needed help with everything, he couldn't even make himself a hot drink as he couldn't touch the cup or tap etc- even through gloves. My husband was classed as a good tolerator and good responder of folfirinox but honestly it was horrendous. From my experience I would say someone on the protocol definitely needs support for the first 3 days as the cold sensitivity is peak and we were repeatedly told cold exposure ( ie opening the fridge and getting cold air on your face/ neck) was potentially lethal. As the cycles progressed and the effects build up you also start to need more general help and encouragement.

In short the person will need help because if the cold at the start of each cycle even though steroids keep their energy high. But as much warm stuff as possible. Buy plastic cutlery, plates and cups as the patients can't touch metal/ china as it hurts them. 

This is a realistic breakdown of my experience and things I think l discovered that would help. 

Hopefully your mum won't suffer the cold symptoms so much. Good luck

I am supporting my sister who is in a similar situation. I live close to her but still the day to day is hard.  Everyday is different. She is on round 3 of this chemo and experiencing nerve pain in her hands and legs.  They want to shrink the turmor prior to her whipple.  How hard was the whipple?  

I think everyone has a different answer as to what kind of support they need or want.   I am worried about how lonely she is getting even with me being close. I spend a lot of

time trying to get her finances and life in order so all she has to focus on is the treatment

Hi, yes it's hard isn't it. 

My husband has actually never had a Whipple. His major issue is a particularly aggressive met in the liver which is being considered for cyber knife treatment to help control it. 

He's moved on through various chemos after having to stop folfirinox due to severe nerve damage. He now in gemcitabine and nabpaclitaxel which is considered equipoise to folfirinox, IE they are considered more or less equal in terms of efficacy. It has given him a life.( We have a young child so this is important for him). It might be worth your sister asking about changing to this if the folfirinox is really affecting her quality of life enormously as this is one of the things that's considered when deciding on chemo ( state of cancer, medical condition, general wellbeing).  

I'm sorry I can't help regarding the Whipple. Wishing you and your sister the best.

Yes all of this is hard. My mum had the Whipple before the Chemo and it was a long operation with an intense recovery on ITU and quite a change in how she could eat afterwards and getting used to the Creon and very small and initially very bland foods. She then managed to eat a bit more varied and actually get more protein in her diet without cramps just before the chemo 8 weeks after but then the chemo was really difficult for her to tolerate with admission for the vomiting and she only recovered her strength after now four weeks so might not go ahead with further cycles. It is a weighing up of where to set priorities in terms of quality of life and what is important to her and what she can manage. 

Thank you so much for taking the time to write about your husbands and your experience, it sounds so tough. My mum had gloves at the ready and plastic spoons etc (thanks to advice from here x). In the end she managed the nerve pain quite well but the vomiting and then much later at the end of week two she got really unwell-still not sure if it was actually the chemo - but she was nearly bedbound for 4 days and struggled with everything and only slowly recovered and her liver enzymes took really long to normalise so for now chemo is on hold.