CAPOX or Capecitabine only? CVLP Trial?

Lee_L 3 months ago

6 replies
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I had a high anterior resection 3 weeks ago and histology is showing 3 of 29 lymph nodes are positive. I have been offered either 3 months of CAPOX or 6 months of Capecitabine tablets. I came out of hospital with shingles and the flu so I’m not exactly feeling fit and in the right frame of mind to make a decision. I don’t have a bag and my bowel is still not working too well with endless diarrhoea (TMI?).

I had breast cancer 10 years ago and reacted really badly to chemo. From that chemo I have ongoing peripheral neuropathy in my right foot - not awful but I wouldn’t want it to get worse. I was adamant I wouldn’t have chemo if I had cancer again and yet here I am facing that tough decision. I was given 5 year survival rates as 55-60% without chemo and 70-75% with. I’m in a dilemma - should I go ahead and, if so, which option should I choose? I have just read the drug information sheets and, oh my, reading those side effects brings it all back.

I am leaning towards saying yes to chemo but I just don’t know which to choose. Are the side effects less with the 6 monthly tablet only option and is it worth taking that choice if it’s slightly less effective?

Also, I have been invited to join the CVLP trial but must have chemo to be accepted for testing and my DNA must show positive for circulating tumours. Anyone actually had their DNA accepted and been given the vaccine?

Sorry for the long winded post but I feel so confused right now.

Thanks x

Parky2170 3 months ago

Hi Lee_L I haven’t been on here for a while but your post resonated with me you can read my profile but in a nutshell I had BC 12 years ago and Colon cancer 3.5years ago

I had chemo for both. I tried capecitabine tabs and lasted 4 days. I found them ghastly I ended up with 30x weekly 5FU in the end which was easily more tolerable. Capox probably quicker but not easier i would guess.
55% versus 75% I would take the opportunity and run with it especially with 3 nodes affected. But we all have to make our own decisions.
good Luck either way. Xx

Lee_L 3 months ago in reply to Parky2170

Thank you. I’m not sure why I haven’t been offered 5FU - a question for the next appointment. I’d certainly prefer just an infusion to having to take tablets as well.
Long may you continue to be cancer free x

Vis 3 months ago in reply to Lee_L

The 5FU usually isn’t ’just an infusion’. I don’t know if it’s the same when given on its own, but when it’s combined with oxaliplatin (that combination is called folfox) it’s given as an infusion in the hospital followed by another 48 hours where it’s given with a pump that you take home. According to my oncologist, most people find the tablets easier than that.
5FU and capecitabine rely on the same mechanism, given in a different form - and some people tolerate one better than the other.

Can your oncologist give you any information about how likely it is that oxaliplatin will make your neuropathy worse? It is an important side effect of oxaliplatin.

blue skies above 3 months ago

Hello Leelaw,

I am very sorry to hear you are going through this.

Like Parky2170 I tried capecitabine tablets (2 a day) and managed 2 weeks before it was ceased.

Background: I had a colon resection and 4 in 27 nodes are affected.

I had one infusion of Capox but the capecitabine I started on the following day affected me greatly. I had issues with my heart and vision. This is apparently a very rare reaction (2 in 100) so now it has ceased and I am being put on alternative infusion.

I declined the trial as would have required 2 hours travel and with the placebo element felt like another thing I could do without so said no.

The side effect sheets are tough to read aren't they.

I hope you make a fast and full recovery from flu and shingles and that there is a medication that may be able to ease the diarrhoea.

Sending strength for your treatment x

Lee_L 3 months ago in reply to blue skies above

Thank you so much for your reply. From what I've read a DPD deficiency can cause that rare reaction. I hope you were tested beforehand and you've been able to recover well.

Can i ask what alternative infusion you were put onto?

Good luck with your treatment x

Lee_L 3 months ago in reply to Vis

My goodness this is all a bit confusing. I've gone from the listed side effects and the 5FU list appears shorter and doesn't include peripheral neuropathy.

At least i'm starting to get my list of questions ready for the appointment on Friday.

Many thanks x