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

@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.

I stopped the Oxiplatin around the end of October. Then continued with four cycles of Capecitabine (2,000 twice a day/two weeks on and one week off). Finished around the 15th of January and had my CT Scans on Jan. 31st expecting to be cancer free. After discovering it had actually spread to my liver and peritoneum, the did a liver biopsy on Feb. 25th. (can't believe it took so long to get in). So that was sent in for genetic testing and my oncologist wanted me to start on Folfiri right away. But the biopsy scans showed no changes since the scans on Jan. 31st. So I decided to hold off on treatment until March 20, when we will start the Folfiri, and whatever immotherapy he has decided upon. I have Metastatic Mucinous Adenocarcinoma. I'm not convinced that Folfiri will work for that. But he did his fellowship right there at Mayo and is a smart guy, so giving him one more chance. The goal is the shrink the tumors in those areas, with possible HIPEC surgery later on. I would come to Mayo if we get to that point because of how specialized that is. Or maybe even the possibility of PIPAC, which seems to show more promise in cancer treatment. He's not an optimistic guy, and everything seems pretty textbook right now. But we'll see what happens next.