Capox - number of cycles - second opinion?

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Good morning - I was wondering whether anyone on here has experience of either reducing the number of cycles on Capox or getting a second opinion. The background to my question relates to my husband who was diagnosed with bowel cancer at the end of June (with no symptoms). Initial biopsy suggested T2 with no spread. He had bowel reconstruction surgery in August and we were fortunate that all the cancer was removed and he has recovered well from the surgery. The biopsy from the tumour suggested it was T3 and 4 out of 23 lymph nodes had cancerous indications - with the nodes furthest away from the tumour being clear. He was advised to have a course of adjuvant chemo - and Capox was the suggestion (an infusion every 3 weeks, concurrent with 2 weeks of tablets). He was told that he should have 8 cycles ie 6 months. Had only 3 LN tested positive, 4 cycles (3months) would have been recommended.

We were advised that the effects are cumulative and so whilst cycle 1 and 2 were Ok, 3 is become quite gruelling and he is beginning to get anxious about the following ones.

I have researched as best I can the reasons for 6months v 3 months and I am seeing a number of studies that suggest the benefits of 6m vs 3m for adjuvant Capos are minimal (and in the event of severe side effects, it is restricted to 3m).

I was wondering whether anyone had any experience of either seeking a second opinion on the length of the treatment or in reducing the number of cycles.

Thanks you in advance for any comments and i hope you have a lovely day.

Kareno62 1 month ago

Hi Goldilocks I had 3 out of 17 lymph nodes affected back in 2016 and had 8 sessions of chemo as it was a few months before the Rapido trial which discovered that 3 months was just as effective

Research from Rapido trail

I had a few issues post surgery (see profile page) so was well out of the usual timescale for starting chemo. The 3 affected nodes were close to the tumour and, as lymph nodes travel in chains, my oncologist said she wouldn’t be too concerned if I didn’t feel up to chemo. I went ahead and didn’t struggle too badly although I wish I hadn’t kept quiet about the tingling in my feet as I still struggle with numbness in them to this day - liveable with but annoying.

If he’s struggling with nausea then it’s worth trying a change in meds - Emend has been a game changer for some people or a reduction in dosage as they tend to start you on the maximum for weight and height. My oncologist also removed the oxaliplatin after 5 or 6 as I was getting a numb tongue and I continued on just capecitabine so that could maybe be a good compromise?

Hope this helps a bit - at the end of the day it’s the belt and braces and the tumour has been removed

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

CerysM 1 month ago

Hi Goldilocks,

I had 0 lymph nodes and nothing in my blood but it was still recommended.

I was told I had to have six months as I had to have half dose but for twice as long due to having the dod deficiency.

After the 7th round I was so poorly they said I wouldn’t do the 8th.

the best things is to record all side effects and their severity and talk them through with your contact at the end of each round.

I hope that helps!
cerysm

Nicnak72 1 month ago

Hello,

Your husband’s condition sounds very similar to mine, but I had 2/44 lymph nodes. I was put on a 3 month cycle of CAPOX at a half dose because of the DPD gene. However, I had a nasty reaction to Capecitabine, which after lots of tests was put down to aortic vasospasm. It was like having a heart attack! I saw my oncologist this week and after 2 cycles she does not think it’s worth putting me through any more of it and she has stopped my treatment completely.

The fear I had for the 2 remaining cycles was causing me a lot more stress and trouble than the actual cancer itself! Your husband must talk to his oncology team about his worries and ask them to explain why the treatment is longer than you would have expected. I felt like a bit of a failure to start with, but my oncologist reassured me that chemo really isn’t for everyone and when the problems start outweighing the benefits then it needs looking at. Xx

Susan13 1 month ago

I had no lymph nodes involved, zero. But they initially planned 12 chemo treatments (folfox) which would have been about 6 months. However, after 7 treatments they suddenly told me they would stop it at 8 treatments (about 4 months). It's hard to say why my plan was initially longer.

I think it's worth asking your oncologist about the number of treatments and hearing his explanation. If you still have questions, then a second opinion is in order.