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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@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.
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!!
@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?
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!
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.