CAPOX wipe out

Kellyo 7 days ago

6 replies
135 subscribers
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Just a little about my journey so far.

I was diagnosed with stage 3 upper rectal cancer December 2025. T4a N2 Emvi positive with crm involved.

Had 6 cycles Folfixiri which was tough symptoms of severe nausea and fatigue which passed once the pump was removed and felt pretty good on week 2 of the cycle.

Had surgery anterior resection April 2026 and recovered really well no stoma or really bad ongoing symptoms.

Histology showed positive in lymph nodes and blood vessels so to have 4 cycles of CAPOX started this on 9th June first round was ok 50% Oxaliplatin because of neuropathy on Folfixiri and 75% Capecitabine. A little nausea and some fatigue but bounced back after a few days.

2nd Round has been awful, increased dose of Oxaliplatin 75% I've not been able to get out of bed for 6 days pretty much slept the whole time, feel sick constantly. I've tried little walks to keep energy up but nothing seems to be making any difference.

Has anyone else had this? I was told CAPOX was a breeze compared to Folfixiri but for me this has absolutely floored me.

Anyone have any suggestions? I don't think I can do another 2 rounds of this

Thanks in advance for any replies

Kelly

Janice 7 days ago

I had to give it up. So nauseous and generally unwell. Admitted to hosp for 3 weeks with sepsis after struggling after 2 rounds of trt.

Kellyo 7 days ago in reply to Janice

I feel for you this is rough stuff. I really want to finish the 4 cycles to give myself the best shot going forward but I feel so awful. Perhaps I should ask to be reduced back down to 50%

Thanks for your reply, its appreciated. I'm feeling quite alone and lost at the moment. I wish you all the best on your journey :)

Janice 7 days ago in reply to Kellyo

I'm not having any more chemo. Mine has now spread. I feel better than i have for 6 months, with no pain, no symptoms at all and no meds. I am back to parkrun every week and socialising with my run club. I just want to stay as well as i am as long as i can. I had an ileostomy in November and seem to be managing that ok.x

Good wishes to you too.x

Kareno62 7 days ago

Hi Kellyo Yes have a chat to your team about maybe reducing the dosage? Unfortunately there’s no pills or potions for managing the fatigue but it’s worth trying something different for the sickness as they usually start you on the cheapest! I’ve heard a lot of success with emend

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

SallyMck 6 days ago

I had the same reaction, the first was just about tolerable but the second, stronger, round was absolutely unbearable. I couldn't eat, had diarrhea, felt so weak, could barely walk and nausea was terrible.

Phoned the chemo team who told me to come straight to A and E at the hospital. They were aware I was coming and I was speedily dealt with. Was admitted for 4 weeks.

No further chemo. Was told I may not survive, but I did. Fantastic care from an amazing medical team.

I suggest you contact your team asap and tell them your symptoms.

I wish you well.

Sazzle57 19 hours ago

Hello Kellyo

I had 8 rounds of Capox last year with a short break in the middle to be able to have a holiday.

I started on full doses of both drugs but had to have the Capecitabine reduced to 50% after 3 cycles because it gave me the most terrible acute diarrhea. That solution worked and I stayed on that dose for the duration.

The Oxaliplatin also had to be reduced later in the cycles, around cycle 5 or 6 I think, because it was making my temperature spike over the threshold the morning after the infusion and I had to keep going in to be checked for an infection. There never was one and it turned out it was just my body reacting to the drug.

My medical team told me that it was normal for the dosages to be reduced as the cycles progressed to try to complete all the cycles. Maybe that could work for you?

I wish you well on your journey and hope your team can find a way forward for you. These drugs are really harsh, I've never experienced anything like it.