Diarrhea & Pembrolizumab Immunotherapy

[Cockailschemocancer]

Sorry for the toilet subject! Does anyone have any hints or tips on what I can eat or drink to help stop this? I’m following BART and taking all the tablets and diorlyte but it’s not stopping, so wanted to know if anyone found a magic trick? Thank you.

[CherylC-J]

Hi through experience with my husband, please check that you are not suffering from colitis. This is a side effect of Pembro and my husband suffered from the runs that would not stop despite tablets etc.

[Cockailschemocancer in reply to CherylC-J]

Thank you - yes that’s what they are trying to avoid. Did he continue to receive treatment? Was there anything he did to try and ease these? Thank you.

[CherylC-J]

He only had one dose of treatment because unfortunately they gave it him at the start of an undetected chest infection (even though is oxygen says were low and they had never been anywhere near this low). So his immune system attacked his lungs and because they couldn’t prove this the drug company would not release anymore of the pembro to him. He was one of the first to receive the treatment after the trials (November 2016 due to the hospital having early access to it before it was approved by Nice on 1 December 2016) and they made loads of mistakes. He started with colitis mid January and they didn’t realise at first that it was the pembro. He was treated with high dose steroids and he was told that even though he only had one treatment it continues to work for 6 months, so at anytime during these months you can develop any of the side effects. Sadly my husband unexpectedly passed away in September 2017 of a blood clot that had developed in his lung. Take care and feel free to ask me anything x

[Cockailschemocancer in reply to CherylC-J]

I’m so sorry to hear about your loss and for still being on here helping other people. Thank you for that information I hadn’t realised it still worked for 6 months. That’s going to be a lot of toilet time for me! Hopefully it will subside soon or I can find some foods that will help it pass. Xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear DaisyFlower06

Sorry to hear you have ongoing diarrhea with Pembrolizumab, for some people this can last a few weeks to a few months.

If this is getting worse or nothing is helping, perhaps go back to the consultant or GP to discuss, you could also discuss this with your local pharmacist.

You probably know already to avoid fresh fruit juices, raw fruit, cereals and vegetables and stay well hydrated.

Cancer research UK have some information and advice on experiencing diarrhea with Pembrolizumab: cancerresearchuk.org/about-...

Macmillan support have some useful information on finding public toilets etc: macmillan.org.uk/cancer-inf...

If you would like to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200, hope you do feel better soon.

Kind regards

The Roy Castle Support Team

[Cockailschemocancer]

Thank you for all this information, it’s very helpful.