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Oxaliplatin is no walk in the park, advice for CAPOX regimen?
Just had first infusion today.
Felt fine and now hours later everything hurts ( numbness, tingling, muscle aches, muscle spasms upon sneezing in my jaw, muscle spasms across my eyes/temple upon tear production and of course upon water being just slightly cooler than room temp) how did you guys manage?
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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!
Thank you for this and for following up.
He has completed 4 rounds of 5FU and honestly he is doing well. His main side effect is the cold sensitivity. He does wear gloves when he has to go into the refrigerator, but I try and take everything out for him beforehand. Hopefully as the weather gets warmer he will feel better. We go for treatment next week and will share this information with the Oncology team.
Welcome, @jd1010. Your questions about the cold packs are good ones. I'm tagging @roywalton to make sure he sees your questions.
JD, the cooling mitts and socks are worn during chemotherapy infusion. You might find this article helpful:
- Can Cooling Gloves and Socks Relieve Chemotherapy Neuropathy? https://www.healthline.com/health/cancer/can-cooling-gloves-and-socks-relieve-chemotherapy-neuropathy
Here's a related discussion:
- Chemo cold cap, socks and mitts: Share your experiences
https://connect.mayoclinic.org/discussion/chemo-cold-cap/
How is your husband doing?