Oxaliplatin is no walk in the park, advice for CAPOX regimen?

I had my first infusion through IV and towards the end, it leaked through the vein. My arm was so painful for a week. I got a port which helped. I had the same jaw tightness and extreme fatigue and nausea. The next infusion they added Emend which helped. I also had a Benadryl IV.
I drank ice water during my infusions and held my hands on a cold cup. That stopped the glass in my throat feeling and brought it down to just a sore throat. I still had jaw tightness
I only made it through two cycles and had to stop because of side effects (diarrhea).
Good luck and try to mentally visualize cancer cells dying

My husband was on a 2 week cycle of FOLFOX with nivolumab, which includes oxaliplatin.

Starting with cycle 7 he started experiencing what he called labored breath: shortly after the infusions he would start breathing more rapidly than usual (30-35 breaths per minute). It would gradually slow down and was resolved before he went back to have the 5FU pump removed 2 days later. Oxygen was always in the high 90's and his lungs were clear. The episodes got a little longer each time.

After cycle 9 two infusions were canceled because of other adverse effects. When he resumed with cycle 10 after the 6 week break, the shortness of breath symptom continued, this time starting before we left the infusion center.

With cycle 11 the shortness of breath started with about 10 minutes still left in the oxaliplatin infusion. It quickly developed into life threatening anaphylaxic shock, with falling blood pressure that required emergency use of vasopressers. He survived and was released from the hospital after a week. But we expect there would have been a different outcome if he had not received an immediate emergency response.

I was very frustrated at the response to the shortness of breath symptom. The drs kept postulating that it was more generalized (do you feel short of breath whenever you exert yourself) or maybe from the nivolumab. However there was a very specific timing pattern that tied it to the chemo - likely the oxaliplatin, tho possibly the 5FU. Nivolumab was not the source since in cycle 8 the dr originally withheld it, and then gave the infusion 2 days later when my husband went back to get the pump removed. The whole breathing episode occurred after the initial infusions, resolved before they even started nivolumab, and did not occur after the separate nivolumab infusion.

This is a very long way of saying you should keep pushing when you feel the drs are not responding adequately to issues you identify.

I was on a Capox treatment for 8 cycles. I quit the Oxaliplatin after 4 cycles because the side effects were getting worse. With each treatment, it was taking longer for the side effects to go away. To enjoy any cold drink, I had to take a straw and drink it like a gerbal. And studies have shown that the benefits of 8 cycles vs 4 of Oxaliplatin is pretty low. I have mucinous adenocarcinoma, and this treatment wasn't effective for me and has spread. I worry about the neuropathy in my feet not restoring. Oxaliplatin is a harsh chemo. It bares contemplation whether a different chemo is a better alternative.

I hope your doctor will listen to you and closely monitor your side effects. I was told by my oncologist that Capox was the “easier” chemo tx, but I had all the symptoms - neuropathy, cold sensitivity, severe muscle contractions in jaw, hands and legs, dizziness, difficulty focusing eyes, and brain fog along with more typical chemo effects of extreme fatigue, nausea and constant diarrhea right away after the first treatment. I hadn’t heard of all the side effects before starting treatment but tried to track them so my oncologist would at least acknowledge that side effects can vary widely in different people and consider a dose adjustment if needed. Sending you lots of positive energy and support.

I did accupuncture and it helped with the pain from neuropathy but didn't improve the numbness.

My husband is just beginning round 5 of FolFox & experienced neuropathy. He has had acupuncture sessions that he believes helped alleviate the issues. Hope this helps others too.

Has anyone tried red light therapy to help with the numbness?

I did ice packs and drank cold water during my infusions. I never experienced the cold sensitivity that others did, but I was only able to complete two treatments before I became ill

Wow - wish I had known about the cold packs! I lived under an electric blanket for 6 months .... also used electric socks 😀

My husband just finished twelve 5FU infusions and scans are clean! question: his fingers continue to be numb (different from the cold sensitivity because now the are insensitive to pain from cold glass (for instance) and he gets a sudden tingling shock in both feet by the ankles at times... Anyone experience this and/or have any suggestions to ease the numbness or feet tingling? Thanks!