Folfirinox

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Hello,

I am due to start my chemo Folfirinox at the end of the month. I was told today that the cold cap isn't an option for me as it doesn't work with it.

Can I ask anyone who has had this drug, have you lost all your hair? 

Thanks 

  • Although it can happen, i think its rare to lose your hair. My dad is on similar and kept all his hair. Drugs for bowel cancer usually effects the digestive system rather than the hair. 

  • Hello! I've been on this- the cold cap is not an option because of the oxaliplatin part of the chemo which makes you sensitive to cold. My understanding is some people do lose their hair from the irinotican part of the chemo- but not all. Hopefully you won't.  

  • good luck with it!!! hope the first session went well and you must be on cycle 2 now!

  • Hello, thanks for replying, not started treatment yet. Starts 26th of July (my wedding anniversary). 

    How did you get on? Did you lose your hair? 

    Did you get a Picc line? That's my other worry.

    Kindest regards 

  • Oh sorry it starts on your anniversary, but please get yourself lovely treats for that day. I have a port not a pic line- I think you need one or the other for this type of chemo- I think there are things about both but perhaps ask about a port and what would be best for you- I was just told I was having a port. It is a small operation and I don't think a pic is- but a pic needs more daily maintenance I think (port I don't have to do anything with now it's in except keep an eye on it). My hair is thinner after 6 cycles but other people don't seem to notice too much, it does come out more when brushing. I've tried to brush as gently as I can and to wash it a bit less. I got it cut a bit shorter before I started but I had quite long hair and read the weight might bring it down- but it's still a few inches below my shoulders. I hope you don't have any or very little. Fingers crossed. 

  • Aw thanks. It's just all a shock, it's the second time for me Pensive 6th cycle, you've done so well!

    How do you cope with life? Every morning and every night it's on my mind. 

    Sorry for the moaning! 

  • Oh gosh you mean second time on folfoxiri or on chemo? I had folfox first then went on to this to go hard on the liver mets!. 

    I'm not sure really- I try to take each section of all this at a time- so not to think too far beyond what I need to do next- next chemo cycle etc- but I also do like to research ahead on treatments coming etc- I definitely go down late night rabbit holes of looking at research which is good in a way but needs to not be at 2am.

    I find my team really help and I get more anxious when I see them less and have less contact. 

    You're not moaning! it's really hard, people are wonderful but don't understand who are not in the situation and there is a lot to do- it's very busy on top of life. 

    I think message boards and things do help a great deal- though I have to regulate myself a bit as I can be a bit obsessive- but the knowledge and help I've found so useful and knowing others are in the situation. 

  • all tips for how you manage gratefully received too! I also find podcasts (not to do with cancer) and audiobooks are good if I can't quiet my mind. And I try to sleep when I want to/ can- obviously not always possible but for example I was just done on Friday- so tired, not feeling great- I went to bed at 8pm and it did me the world of good- I think I just needed to shut off (but I can't always do that as I said- sometimes I will be awake at 2am)

  • Well, I had chemo Oxiplatin first time and now to get Folfirinox for my liver. It is still a shock to be honest. I honestly thought after the first chemo/surgery I was done Pensive

    Yes this forum is like the only place I can message people in a similar boat.. although I try not to go down a rabbit hole like you say.

    My sleep is not great either, my mind just races at night and then I wake up shattered. What is your diagnosis with your liver if you don't me asking? 

  • Oh it sounds similar perhaps- I had folfox originally to shrink my primary and at first scans the primary was responding to chemo but my ovarian mets were not so it was decided to do surgery on bowel and ovary (which put me into menopause). After that I'm on folfoxiri to shrink liver mets.

    I'm really sorry, it must have been a big shock, I did know I had the liver mets still there when I had my first surgery. My cancer overall was found when I had a scan for an old gynae procedure so the ovarian met was actually found first then they did a CT, found the primary, I had a colonoscopy etc. 

    My liver has mets that we are trying to shrink with chemo and hoping to ablate or have surgery on is the current plan! I'm hoping to know more in the next few weeks after the latest scans about what the next steps are. 

    How about you with the liver?