Folfirinox - what to expect

Folfurinox was my first experience of chemo after a Whipple op. I didn’t react well to the side effects (diarrhoea and vomiting, extreme fatigue) but learned to take the prescribed loperamide which helped a lot. I had diverticulitis as well which was a nuisance and landed me in hospital for 10 days.  After 6 cycles I began to think I couldn’t continue but, after speaking to my oncologist, he tweaked the treatment and it was more bearable. Good luck to you both x

Hi wify55, I’m sorry about your partners diagnoses.
My husband who was diagnosed in late Seitember of PC is 48 and On his 5th round of Folfurinix amongst 2 other chemos. From his experience his main side effects are sickness and feeling very tired and sleepy for a few days. 
the docs have tweaked his sickness meds over the first 3 rounds and have seemed to sorted the sickness. 
He has not suffered with Diarrhoea.
He will need to keep warm, so hat,scarf and gloves will be needed when ever he is out also no cold drinks or food or handling cold things. All drinks are room temp( which has been hard in this cold weather). A heat pad may help as my husband has pins and needles in his hands and feet when cold. 
Silly things like brushing his teeth will need to be done with warm water and I turn the water on as the taps are cold and hurt his hands, I warm my husbands cutlery when eating and I don’t let him near the fridge or freezer. If his voice goes funny give him a warm drink this normally stops the horseness voice. A hot water bottle was also good in the cold weather. 

I hope the chemo helps xxx 

Not on this blog too often so just seen this.

I’ve just finished my Folfirinox treatment.  As I understand it some doctors start with a “standard” concentration of drugs and dilute downwards if patient has poor reaction.  However, one doctor suggested to me that it would be better to START at the reduced level and build up to full dose if patient deals well with the side effects.

I suffered from one bout of nausea (the prescribed medication really helped) on my 2nd treatment and diarrhoea throughout the whole course of treatment - loperamide really helped with this.  I learnt to anticipate the diarrhoea and started taking loperamide early, before it hit.

Early on I was tired and slept a great deal but this got better as the treatment progressed.

I did get cold (still do) but put this down to severe weight loss.  I only got slight neuropathy in hands, so was lucky with that.  Other people have reported extreme neuropathy, with difficulty walking.

I had some skin problems (feet and bottom) and was prescribed eczema cream which gave some relief.

Make sure you take Creon and the pain relief offered (paracetamol and Zomorph for me).

Easy to say, especially with current weather, but when possible try to get out in the fresh air.  If only for 30/60 minutes per day.  If/when you get into a routine make sure to plan little trips out - try to have something in the diary to look forward to.  Hubby will be tired and fatigued, so climbing hills etc may be too taxing - but walks on the flat e.g. canal side are just as enjoyable.

As they say…… it is a journey, and just to get to the end of the treatment is a great achievement.  As my consultant said to me at the start…..Folfirinox is brutal.  If the side effects are too distressing then a reduction in concentration will help, or even a change to another chemo treatment e.g. Gemcitabine.

Iggy

Thank you so much for that info, hubby is starting chemo tomorrow on 2/3 drugs for Folfirinox (not having irinotecan at first) as liver function has deteriorated and that coupled with his current symptoms means our doc thinks he may not be resilient enough for the full blown Folfirinox just yet. Fingers crossed for the next few weeks. 

Thanks Iggy, all of that info is so useful. Our doc has also suggested starting at a reduced level and has changed the pain meds to Zomorph and given some steroids to try and help give hubby a boost before chemo starts tomorrow.

One more thing - diet.

For 3/4 treatments I lost my appetite. My wife tried everything possible but I could not eat much.  Little and often was by far the best way - with quite a lot of tasty food, but (for me) not too spicy.  

I was prescribed Fortisip to try to add weight but I could not get on with them - too sweet.  However I went from a “one pudding per year man” to eating a lot of cakes, scones etc - food that had to be chewed e.g. flapjacks.  I still have these.

I eventually regained my appetite and now probably eat more than I did before diagnosis.

I was never a great water drinker so to get liquid intake I have a range of drinks from Horlicks, Vimto to non/low alcohol beer/Guinness (very good).

As mentioned, I did get cold so now wear bed socks at night and thermal leggings during the day as well as pullovers.  We even invested in an electric blanket.  We’ve not used it yet this winter but think we may do if it gets any colder.

Hope this helps.

Iggy

Heelo, just read your reply.  My husband is due to start chemotherapy on 3rd Feb.  Thanks for the tips.

Good luck to your husband for 3rd of February I hope all goes well. Take good care of yourself too x