Scared of a "chemo break" with advanced bowel cancer (liver & peritoneal spread)

Ell77en 21 days ago

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Hello everyone,

My dad (70) has advanced bowel cancer with extensive spread to his liver and peritoneal lining. He also has a stoma.

He has just finished FOLFOX and had a brilliant response—his CEA dropped by 70% down to 33, and his scans show shrinkage in his lungs and main liver mass, with everything else stable. Physically, he’s doing amazing right now, gaining weight and back to walking And cycling.

We just had two completely opposing medical opinions and I don’t know what to do:

1) A second opinion consultant at the Christie’s center recommended switching immediately to FOLFIRI to keep the foot on the gas and prevent a sudden flare-up or blockage in the liver/peritoneum.

2) Our local NHS oncologist is strongly pushing for a treatment holiday/chemo break with blood monitoring (CEA and liver function) every 6 weeks. He argues that continuous chemo right now has diminishing returns and we should save his strength and keep FOLFIRI in reserve.

I am so scared that taking a break means the cancer will suddenly flare up or cause a blockage before the blood tests catch it. But I also know there is no cure, and I desperately want my dad to live as well as he can for as long as possible.

Has anyone else with a heavy tumour burden taken a chemo break after a good response despite having a lot of cancer in tact? How did you handle the anxiety, and did the blood monitoring catch things in time?

Thank you so much.

court 21 days ago

Hi Ell77en

My mum had a significant spread . If you click on my name you can read part of her bio . She passed in 2024 but lived with stage 4 cancer for 15 years .
If you are prepared to accept it will grow untreated you could discuss with his team the duration for monitoring and CEA .
My mum was every three month .

You might like to pop over to bowel cancer U.K. as there are some people there who have used continuous chemo at a maintenance dose and for many years . They could probably give you more insight into how their teams made the decision and how they handle it .

Its a tough choice .

Take care ,

Court

Helpline Number 0808 808 0000

Ell77en 20 days ago in reply to court

Thank you @ court I guess we know that at some point it will grow but the thing that makes me very anxious is that there is still so much cancer and his liver in particular is the area where although it’s reduced from the chemo there is still a lot which we’ve been told is the biggest threat to his life. I’m scared because once his liver goes that will mean no chemo and no options. My dad is leaning towards a chemo holiday for longer because he felt so awful and unable to do anything on FOLFOX .

I guess I wish he’d managed to complete the six cycles and be in a place where it wasn’t quite so volatile. I know it’s important for him to have quality of life too but it’s just so hard to know what’s the right thing in this early stage of treatment. Did your mums spread get reduced so significantly that she wasn’t as high risk when taking chemo breaks?

Appreciate hearing your experiences here.

court 20 days ago in reply to Ell77en

They definitely did not give us any reassurances in terms of spread which was really hard .

But the second year she had a reduction in her dose . That really helped with the side effects .

She did yo-yo but she had surgery after the first so that bought her more time off but she was off for about six months

It’s a terrible stress .

Finding the balance is challenging but you will be vigilant and act when necessary .

Take care Court

Helpline Number 0808 808 0000