IV Chemo (Folfox) advice

Hi DDDDD.

I'm on same but without the Oxaliplaton (the OX part)

I have Folinic acid + Fluorouracil (the FOLF parts) every 2 weeks. I have IVs in hospital (inc steroids) for half a day on day 1, then days 2 and 3 are with IV via portable pressurised IV at home (or out and about) - i have tablet steroids for these 2 days.

My cycles are never the same in experience, but i do find that day 4 for anything from 5 to 10 days can be pretty tough.

I'm not at your hospital and my tumour was in different area, but happy to help if i can. If there is anything you don't want to share publically, you can private message people by using the "friend" option. Click on usernames to read profiles and see who best fits for you.

Thanks for input.  Disappointing to hear that days 5 to 10 can be pretty tough. I'm still finding my way around this media; I'll maybe re post in another section.

Hello DDDD,

A warm welcome to the board.  I didn’t join this board until a few months into my diagnoses but so wish I’d joined earlier, there is so much support and advice here from people who been there.

I had FOLFOX. I was diagnosed with Stage 3 bowel cancer in December 2020, however, I went straight to surgery (no radiotherapy/oral chemo) for a lower anterior resection (LAR).  A couple of months after this I started 6 rounds of FOLFOX via Picc line, similar regime to yours – (a 2 week cycle - blood test 2 days before chemo, chemo as outpatient then sent home with 46/48 hour pump which was disconnected 2 days later).

My bio gives some information but it's not up to date (most sort that).

I’m not in the Guildford area, I’m in Berkshire but I’m happy to talk to you regarding my experience and things I did which I believe helped me.

Take Care

Net77

@DDDDD

Hi David

My husband is currently on nine cycles of Folfox but at the Royal Marsden in Sutton. He has just completed number four. He has 100% dose of Oxaliplatin and 75% dose of 5Fu via a port in his chest. He feels rough for three days after day one infusion. Fatigue, nausea and the cold issue mostly. The cold problem has continued for a little longer as we have gone through the cycles so has to be careful outside on very cold days for about a week. From day five he starts to feel better and by day seven back to normal. His appetite is lower to start with. He takes steroids for three days and some anti sickness but after that he doesn’t need anything. 

He has found this much easier than the Capox before. 
The pump is small and no trouble but can’t shower with it on. For your PICC line you can get a shower guard to put on when not connected to pump.

I hope this has helped, obviously everyone is different but his experience is fairly positive considering what he is having. 

All the best Karen 

Thanks Karen, that's really helpful

Thanks Net77, I've now read your very detailed bio, very helpful.  You've certainly been through a lot.