Hello,
Im new here and was wondering about people’s experiences of oxaliplatin
I am 44 and had a right sided hemicolectomy with CME at the end of last year. Since then I’ve had my first session with TOMOX (raltitrexed and oxaliplatin).
Felt rough for the first week but have felt better each day of the second week. I just wanted to know whether the oxaliplatin side effects are likely to get worse with each infusion?
The first week I had a lot of pins and needles and numbness and nausea and feeling generally fluey. It suddenly got a lot better from day 8. Still have some tingling but not as bad in the cold and the nausea has gone. Is it likely to follow the same pattern each time or get worse for longer? Also the infusion was fine until half an hour before the end when my arm hurt and the tingling/numbness started and I’m a bit concerned about it hurting again next time and whether it’s likely to start hurting earlier.
I will be speaking to my oncologist soon but would love to hear of any personal experiences too.
many thanks
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
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