CAPOX or Capecitabine for 6 months for Colon Cancer

Hi Little Billie

I am sorry that you have not yet had a response to your post but sometimes it can just take a little longer.

I am sorry to hear that you have had surgery for bowel cancer and hope that you have recovered well from it. My own cancer was endometrial and I also had surgery. After the surgery it was recommended that I had adjuvant chemotherapy and remember it being a scary time. 

My chemo left me with peripheral neuropathy and I can understand your worries about further nerve damage after your previous chemo. 

It is a hard decision to make. My own chemo was reduced in dosage following neuropathy symptoms from the first cycle. 

While you are waiting for someone to reply to your post, I wonder if it would be worth giving the Macmillan Support Line a call and talking to one of the nurses about your concerns with the oxaliplatin and to talk about the different chemo regimes you have been offered. They are there from 8am-8pm daily. 

I wish you well for your treatment whichever one you decide to do.

Jane

Evening,

I’m just over a year after finishing 3 months of CAPOX (Oxaliplatin infusion followed by 2 weeks of Capecitabine ). When I was having my initial consultation with my chemo Dr, he said that there was some scheme which, if I volunteered to go on it, I would be randomly assigned either the Capecitabine pills or the CAPOX route.  He quite heavily encouraged me not to volunteer as he wanted to give me both because of what was found in my biopsy after a right hemicolectomy (12 out of 34 lymph nodes involved).

I went with his recommendation.

I struggled with the neuropathy during the 12 weeks and still have numb finger tips.  Did I make the right decision?  Who knows, but I’m still here.  I am no chemo Dr, but it seemed to me that the CAPOX treatment was suggested as it was/is more aggressive.  I should say that some people I talked to during my chemo weren’t phased at all by the Oxaliplatin!

not sure if this helps but it’s what I experienced. 

All the best, Paul

Hi little Billie, 

I am a year on from 8 cycles of capox as an adjuvant treatment after my op. I developed peripheral neuropathy after my last 2 cycles. 

It got a little worse over a few months and then improved and then got worse again with the winter but it ever so slowly improved. My fingers recovered completely but I still have slight tingling at the tops of my first 3 toes. It isn't painful but I notice it when it gets colder. 

I had very little side effects from the capacitabine apart from some cramps the first 2 cycles. 

Is your oncologist aware you still have neuropathy from your last chemo? I would discuss it with them to ensure they think capox is still right for you. 

Hi littlebillie.  Stage 4 bowel cancer here. Large aggressive tumour removed May this year - only previous symptom was extreme constipation! 8 hour emergency op and now have ileostomy which was unexpected but absolutely no problem to manage. Was offered CAPOX after four spots noted on liver - just started round 4 of 8, 80% strength. Because my CEA levels have dropped from 168 to 64 (normal adult 5 - 8), looks like I may be able to get ablation or resection of liver after round 4 which is great news! Have only had side effect of pins and needles for a few days after the drip, but heat pad helps that. No other issues - appetite good and putting weight back on, so feeling good and positive!

Maybe I  have been lucky, but I would have no issue on recommending you to consider CAPOX. Hope things move on for you whatever you decide!

All the best from bonnie Scotland! Hew

Hi my husband was in a similar position to you - he had chemotherapy for testicular cancer  a few years ago which included cisplatin which his oncologist described as a sister drug to oxaliplatin. The oncologist said the body can "remember" chemo and neuropathy was a major concern for hubby as he plays the guitar. He was reassured that the oncologist said they would keep a close eye on this.

After some thought he decided on the capox, partly to get it done sooner and partly because it does seem to offer some benefit. He is just about to complete his first cycle and has had some tingling which is fading. He has a call with the oncologist to discuss before his next cycle. He was given the option of a dose reduction if symptoms became very problematic. 

It is an individual decision so don't be afraid to ask more questions before you commit. Whatever you decide I hope it goes smoothly for you.

Hi lazybear - just to say that I'm a keyboard player and other than a couple of days of the pins and needles, I have had no issues after round 4 of CAPOX which affects my playing. Hope your hubby has the same experience and keeps the guitar going ok!

Would love to hear responses on this thread as I’m in the same boat as you - surgery mid August and now been offered 3 months CAPOX as follow-up as been told I’m considered low risk of secondaries.

Hi Lynne - I an stage 4 bowel cancer with small liver spots. No problem other than pins and needles for a few days after CAPOX drip. Appetite fine, weight going on, sleeping fine etc. No nausea, undue fatigue - maybe I've just been lucky! Round 4 just underway (80% strength), and CEA levels well down so liver ablation/resection may actually be done soon (originally 8 rounds scheduled).

I'd happily recommend CAPOX!

I had a section of my Sigmoid Colon removed robotically in the Spring of 2023 after a Stage 3 diagnosis, 10 lymph nodes were removed and 1 was found to contain cancer cells. CAPOX Chemo followed for 12 weeks. The Oxaliplatin fusion side effects were tough, very tough. I’m now 2 1/2 years and have regular CT Scans and bloods and so far I’m good, apart from some slight numbness in my fingers when I get tired.