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

Posted by chinoomee @chinoomee, Mar 7, 2024

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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@kjm246

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.

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@kjm246 You are so right. So important to let the oncology team know promptly.

I have heard first hand numerous accounts from others using oxaliplatin who needed adjustment or who couldn’t tolerate it at all and needed it dropped. Hard to foreshadow who will and who will not have trouble with it, including what lingering neuropathy there may or may not be after treatment.

I don’t think most oncology teams prepare patients well enough around oxaliplatin. I was fortunate mine did. I was able to choose and chose not to go that route.

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@roywalton

Suggest you have the infusion nurse wrap your fingers and toes in ice packs during infusion. This really helps prevent cold sensitivity and peripheral neuropathy

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The cold pack gloves and socks have helped a ton, which I bought on Amazon, and suck on ice chips the entire time while receiving the oxaliplatin. It works!!

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@duane4cancer

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.

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@duane4cancer, it's not uncommon for an oncologist to recommend reducing the dose of a drug in a regimen or to eliminate it if the the side effects are limiting quality of life. My dad also stopped the oxiplatin in his regimen due to increasing neuropathy and to try and avoid it being permanent. He also had type 2 diabetes, so that increased his risk of neuropathy.

Duane, how long has it been since you stopped oxiplatin? Are you currently on any treatment?

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@kathyv66

Mine was also 6 months - IV and then two weeks of pills, then a week off. I experienced many of the same side effects - day 3 crash, cold sensitivity, nausea, I would lose the ability to walk unassisted, my speech was garbled and my hands didn't function properly during the last 30 minutes of my IV treatments, then I would slowly recover enough to walk on my own over the next 4-5 hours. I lived under an electric blanket and found journalling helpful as well. I ate whatever I could tolerate - ensure and boost protein drinks (room temp) were good.

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Hi, thanks for replying. That FOLFOX was no picnic—but we did it! I have residual neuropathy in feet and finger tips—but hoping it will resolve with time. After FOLFOX, a PET scan showed NED (no evidence of disease—yay, knock wood, thank God).
However, now I’m on Xeloda (capecetibine/oral 5-FU) pills. My oncologist said it’s like extra insurance coverage. Instead of 2 weeks on, one week off, my doc has me on 7 days on and 7 days off. Basically, pills every other week. He said some studies have shown that by the second week, drug cumulation potentially may cause more difficult-to-manage side effects. I’m extremely sensitive to ALL meds, so he felt this schedule would be more tolerable for me, and it adds up to the same protocol dosing. (Do not want to cast any doubt on anyone else’s treatment or experience—this is my individual situation.)
Just to be sure: were you on capecetibine (Xeloda/oral 5-FU)? How are you? How did you tolerate the pills? Hope you’re doing well now!

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@kittycomehome

Hi, thanks for replying. That FOLFOX was no picnic—but we did it! I have residual neuropathy in feet and finger tips—but hoping it will resolve with time. After FOLFOX, a PET scan showed NED (no evidence of disease—yay, knock wood, thank God).
However, now I’m on Xeloda (capecetibine/oral 5-FU) pills. My oncologist said it’s like extra insurance coverage. Instead of 2 weeks on, one week off, my doc has me on 7 days on and 7 days off. Basically, pills every other week. He said some studies have shown that by the second week, drug cumulation potentially may cause more difficult-to-manage side effects. I’m extremely sensitive to ALL meds, so he felt this schedule would be more tolerable for me, and it adds up to the same protocol dosing. (Do not want to cast any doubt on anyone else’s treatment or experience—this is my individual situation.)
Just to be sure: were you on capecetibine (Xeloda/oral 5-FU)? How are you? How did you tolerate the pills? Hope you’re doing well now!

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I have neuropathy in my feet (I did about 6 months of accupuncture and that seemed to resolve the pain, but I still have numbness and some burning). I have very slight numbness in my fingertips. My oncologist told me the neuropathy would resolve within 6 months of finishing treatment and would not improve after that. Mine didn't really start yo improve until 6 months after treatment. Barefoot shoes have helped along with magnesium cream mixed with castor oil daily.

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