Living with Fulforinox - some tips

[T_pc_slogger]

Having been diagnosed 18 months ago I have been through many Folfirinox cycles so I thought I would post some of the tips and tricks that have proved useful.

For the first 12 cycles the mix included Oxaliplatin and this did produce some significant side effects. I tried several different anti-nausea treatments and settled on Metaclopramide. I guess this is highly individual.

 

I found that the side effects peaked in day 6 and 7. I kept myself to myself during those days and would often go to sleep in the afternoon. I live with my wife who has been great and I totally acknowledge how lucky I have been to have a supportive partner. On days 6 and 7 though it was better to keep quite isolated but everyone copes in different ways. By day 8 my energy would begin to return.

 

Over the 14 day treatment cycle I had to look after my digestion carefully. I was on a high wire with constipation on one side and diarrhoea on the other. After a bit I got used to this balancing act and used different breakfasts and occassionally meds to stay in balance.

 

Food that worked

• Soda water. I drink gallons of the stuff. Is it just me?
• Mild curries. This is a common tip and it worked for me, but only at the least spicy end of the spectrum.
• Sloppy food. Outside the peak side effect days I made a point of eating a normal range of food but often with a sauce or gravy to go with it.
• Dark chocolate ginger biscuits. These hit the spot better than the ginger beer that is often mentioned.
• Soups of practically every flavour.

 

I would say the single thing that made the most difference was treats. Chemo is not fun. I found my natural optimisim and to some degree my sense of humour dipped as the side effects peaked. A treat to look forward at the end of the treatment cycle made a lot of difference. A day out with a member of the family. A favourite meal. During the summer I was able to arrange some three week intervals between treatments and so we could go slightly further afield, see some different people and countryside. Something in the immediate future to vizualise - sometimes quite literally with a picture pinned to the wall - made a lot of difference to me.

 

I would be really interested in others experiences, including the small things that make a difference.

[Sandyvon]

Thank you for your “small things that make a difference” post. I can’t contribute anything at the moment but I love your positive outlook which will support others to reframe their chemo experiences. 
 

Best wishes.