Experiences with Oxaliplatin

Hello Seraphina

Oxiolatin can cause tingling/numbness in hands and feet which can lead to peripheral neuropathy.

It is worthwhile discussing with your team as the dosage can be changed if necessary.  I had 12 cycles of Oxiplatin in 2024 and still have peripheral neuropathy in my hands and feet.  The dosage was reduced and I have subsequently had acupuncture to try to help.

If you experience any tingling etc during infusions you should let the team know as it could be the start of an allergic reaction.  This happened to me on cycle 10 of Cetuximab and 5fu but was quickly sorted out with an injection.

Wishing you all the best with your ongoing treatment.

Many thanks for taking the time to respond, Sqaurebox, I really appreciate it. 

I’m sorry to hear that you still have peripheral neuropathy in your hands and feet. Thanks for letting me know about the potential for it to be the start of an allergic reaction during the infusion - I hadn’t considered that. I will definitely let them know if it happens again and it is really reassuring to hear that yours was quickly sorted with an injection. 

many thanks for your good wishes - wishing you all the best too. 

Hi Seraphina,

my husband had six rounds of oxaliplatin alongside capacetamin (sorry sure I spelt that wrong). He did find that symptoms got a little worse each time but they never reached unbearable for him. Generally they faded by his next treatment, usually day 8-10 (his was two weekly) and it was only with the final two where he found the tingling lasted longer.  He wore gloves whenever he handled anything cold and towards the later cycles would wear them most of the time which got a few comments when it was boiling hot in July! 
We were given the tip of placing a heat pad/hot water bottle on the arm he was having the IV in (about a hands width above the cannula) which worked really well in reducing the pain and tingling in his arm during the infusion and after so would definitely look into that.

he finished chemo end of September and from memory within a month all tingling had gone so hopefully it will be the same for you. Not sure about sickness as he went on to have chemo-radiotherapy which made him feel a little sick, but again nothing that couldn’t be managed with anti sickness tablets.

he finished radio in November, started feeling much better in December, and by January he was like a new man, feeling the best he’d felt in well over a year! 

Best of luck with treatment and hope all goes smoothly for you xx

Hi Rosie in the sun, thanks so much for your response. 

It’s good to hear that your husband didn’t find the side effects unbearable even though they did get a little worse. That’s reassuring. I found it manageable last time even though it was unpleasant and I’m really hoping it will be manageable again but am a little nervous. 
thanks so much for the tip about the hot water bottle - I shall definitely try that with the next one. 

so glad to hear that your husband is feeling so much better! Thank you for your good wishes xx

I had Capox - capecitabine tablets with oxaliplatin infusions.   (also chemo radiotherapy).
by infusion number 3 my dose was reduced, all the veins I had oxalaplatin in, have burnt away and not returned, from 23/24.  Heat pads during infusion and on the journey home helped, I wish I'd been offered a port.  It wasn't offered until number 4.  Just too late really.  
  I couldn't even walk out of the chemo ward after infusions 4 to 6.      When chemo ended I 'coasted' so the neuropathy just got worse and worse  for 6 months, until I couldn't even navigate getting down a simple kerb without help or 2 sticks and I couldn't shower on my own for fear of falling over.    No one cared, no one followed me up, I was just left to get on with it. I'm not that much better. 
I was really lucky that I'd/my tumour,  had a complete clinical response, that might last - or the cancer might come back, but at that point, I was just discharged from oncology and let loose with scans etc organised by my colorectal consultant.  She is lovely, but doesn't see the issues that I have to deal with day to day. 

  My GPs have been pretty unsupportive. One said 'why have you waited to come in' when I had massively swollen legs and feet - and another held the door open for me to leave, saying 'I can't possibly diagnose cognative issues/chemo brain - and just waited for me to leave -  that really made me feel awful and not worthy of any care. She just wiped the floor with me. The Macmillan page says to see your GP asap if you have cognative issues, my GP didn't want to know.     I had to fight my corner for that one and it turns out I had had a micro bleed in my brain - again, could be chemo related - but no one is going to confirm that. It took 6 months of fighting to get as  far as a brain scan.    No one will put that chemo brain issue into writing for me to get ill health retirement. 
 I have also got a fast growing cataract that is also probably chemo related.  
It is fair enough that everyone monitors the treatment regarding the outcome on the cancer - but surely someone should be monitoring the side effects too, to give people some help and support with their incomes and lives etc.   . 
You just have to fight for everything.   Don't get fobbed off.  
Keep a chemo diary and shout your needs, if you don't  shout, you don't get.   

from my experience, the oxy infusion side effects are cummulative and will get worse every time.  

Hi. I had two infusions of this drug but the second time I had a very severe reaction to it. They decided too much of a risk to carry on. Only supposed to have four treatments so had the two. Hoping it is enough. Still taking the oral tablets though. I am having preventative chemo so hoping it all works. I get pins and needles and nausea with the tablets which are a different drug. Its awful.

Hi Seraphina,

I am just about to have my 12th, and final FOLFOX infusion, the last six of which have been adjuvant after two surgeries and 6 cycles sandwiched inbetween.  The side effects have built up over the last 6 cycles, the main one being neuropathy in my feet.  After cycle 8, they reduced the Oxaliplatin element by 25%, but being honest, the side effects have steadily gotten worse despite the lesser dose.  They are manageable, don't get me wrong, but they are nasty, and it's predominantly from the Oxi.

I have a port, as FOLFOX involves 2 days of 5FU via pump at home, so I don't have any vein issues.  Would it be worth asking about a portacath?  They do make my 5 hour infusion more comfortable.

Wishing you well as we navigate this journey, 

Unfortunately, my side effects reached unbearable for me. I had to stop after 2 rounds. I won't do chemo again. 

I had 4 rounds, first two were fine 3rd one there was a delay to the meds and I had a glucose and saline drip for 5 hours before it started, caused real pain when it went in, I can can attest to the hot pad during the infusion helping a lot. I think my veins had collapsed. I am 4 months out and still have neuropathy in my feet, just started again today on Fu5 and bevacuizmab (or something!). Overall the sensitive to cold and the change in taste was the worst thing for me about oxaliplatin, especially as I don’t drink tea or coffee. It did get a little worse each time but I only had 4 cycles and once I stopped things reversed quickly (except the feet which got a bit worse then levelled out) good luck- I hope it works in its primary aim for you. The side effects are annoying and uncomfortable but if it kills the cancer they have to worth it. 
for me it shrunk my tumour to allow for an op that wasn’t possible before, but it seems it had already spread and so I am  now fighting new battles. 

Hi there,

18 months ago I had oxaliplatin 4 cycles and also those large pink chemo pills, many peoples side affects can differ, some have a lot and some more, unfortunately for me every time I had an infusion day whilst in the chemo chair I was terribly sick, it upset me a lot not just the sickness but being sick in front of others having there chemo , every time I was glad to get out , I had neuropathy which still hasn’t left me and peeling skin on the bottom of my feet, but I must say some people just breeze through it.

I’m now back in the room having FOLFURI chemo because cancer has returned to my liver, but what I have learned is everything passes, and this too will pass for you.

All my best wishes to you.