I’m due to start 2 weekly cycles of Folfox and had the ‘chat’ with the oncology nurse going over what to expect. I was told to bring a warm scarf and not breathe in cold air when leaving the hospital or to drink anything cold. Also, to wear gloves when going into the fridge or freezer.
Is this just on the day of infusion or does it last throughout the cycle? Will I be able to eat fruit from the fridge or will everything need to be at room temperature?
Will I need a heat pad and gloves during the infusion?
Is it ok to have the PICC line in my left arm? Will I be able to have a bath with the line in or is it showers throughout treatment?
I probably have a hundred other questions but I don’t really know what they are yet.
Grateful for any advice
Thank you
Lee x
The cold sensitivity varies. For some people it passes within a few days. For me, it tended to hang around longer. It was at its worst the first 5-7 days after treatment and never completely dissipated. I was still doing room temperature water on the day of my next infusion.
I would not have been able to eat cold fruit from the fridge at all. I did eat some fruit I had let sit out at room temperature but even that was hard.
I may have been more sensitive to this side-effect than some others. They reduced my dose twice and offered to stop the Oxaliplatin completely. I didn't take them up on that offer but kind of wish I had. My peripheral neuropathy ended up becoming permanent.
I'd advise reporting the intensity of your symptoms in detail and following any advice on dose reductions.
I don't mean to scare you. Overall it was more tolerable than it sounds. It's no fun for sure but tolerable. I did find that I could tolerate warm drinks pretty quickly and that helped.
Hi LeeLaw I’ve attached a link to a post that we started a few years ago about chemo top tips. There can be a lot of side effects but there is also a lot of fixes and if say one anti sickness doesn’t work then another brand can make all the difference
I had a pic line and it is so much easier than a cannula each time. I had mine in my right arm and you cannot play tennis or golf ( not that I did anyway!) You should be given a prescription for a limbo arm cover. This is a plastic sleeve with a rubber seal at each end which you pull up over the pic line for showering. You can have a bath but keep the line out of the water - it does not want to be soaked.
The cold touch often eases off after the first couple of days but it can last a bit longer each time. It’s handy to keep a bit of a diary as it can remind you of any issues you’ve had and also you might find that you feel ok on your week off and can plan something nice.
Hope this helps and feel free to ask if you’ve any more questions not covered
Take care
Karen x
Thanks Susan13. I’ve had a different chemo before for BC and seemed to have every side effect under the sun that time. I still have peripheral neuropathy from that but it’s manageable. The plan is for me to stop the Ox part and do 6 months of 5FU if it gets me again this time. However, I keep questioning if the extra 15% on 5 year survival rate is worth the decrease in quality of life. Let’s see how I feel after the first one.
Thanks for warm drinks advice I’ll get some fruit teas.
Did you have any hair loss?
L xx
Thanks Kareno62. I’ll be having a PICC line as Folfox involves being hooked up to a pump for 48 hours after infusion I’m not looking forward to that at all. It’ll have to go in my left arm so I hope that’s ok. it sounds like showering is going to be an easier option.
Last time I had chemo for breast cancer I was given Emend for sickness and I’ve had to stamp my foot pretty hard to get them to agree it this time. I had cancer 10 years ago and can see such a difference in care provision. Sadly it was much better then than now
I’ll do what you say about a diary - good idea.
L x
Hair loss isnt common but can happen so be gentle on your hair.I had capox and the oxy did cause hair loss with me.
i would have liked to have been warned it was a posiblility then it wouldnt have been such a shock.
All the best with your treatment.you will get through it.
kath.
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