Bilirubin levels and immunotherapy? - The Roy Castle Lu...

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Bilirubin levels and immunotherapy?

Rebeccaannerose profile image
8 Replies

Hi Folks,

I’m just wondering if anyone can shed some light on bilirubin levels and or liver issues with immunotherapy or has had any similar experience… My partner has had his treatment (fortnightly durvamulab) cancelled today as his bilirubin is at 30 and they want to ultrasound this week. We’d never heard the word before this morning and the call from the hospital was short so we have no idea how serious this is. I of course immediately googled and got lots of scary studies about liver damage and reduced survival, so I now have no idea if this is a normal blip or serious.

he is 53, otherwise fit and well (being treated for stage 3 NSCLC) and doesn’t feel ill at all.

With thanks,

Rebecca

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Rebeccaannerose
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RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hi Rebeccaannerose

Bilirubin is measured from liver function blood tests, it is a natural substance , yellow in colour, that is broken down from red blood cells and some cancer treatments can impact on the liver on how it works and cause inflammation of the liver.

A liver ultrasound is usually done for any raised liver function tests, and cancer treatment may be paused until this is assessed. Try not to look anything up online as the information may not be accurate or up to date.

It is not uncommon for immunotherapy to upset the body's biochemistry. These are strong drugs that can affect the working of the liver, whose function is to metabolise these drugs and sometimes it is just too much for the liver.

Someone with a very high bilirubin may present with jaundice ( a yellowing of the skin or white of the eyes), it may be that they have caught this early , can rest the liver, and treat any symptoms that your partner may have, it sounds like your partner is being well looked after.

It is understandably a worrying and anxious time and you could perhaps discuss this with the lung cancer nurse specialist who will be able to to guide you through what happens next. It is encouraging that he feels well.

This is the link to download our booklet on Immunotherapy :roycastle.org/app/uploads/2...

Hope you hear from others in the forum and you are welcome to call our ask the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email the nurse at lungcancerhelp@roycastle.org

Kind regards

The Roy Castle Support Team

Rebeccaannerose profile image
Rebeccaannerose in reply toRoyCastleHelpline

Thank you for clarifying! Would this be classed as ‘liver damage’ or is that further down the line if issues persist?

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle in reply toRebeccaannerose

This will be classified from the liver ultrasound as it could be inflammation of the liver as a side effect of the immunotherapy; severe liver damage is often called cirrhosis (scarring) of the liver caused by long-term liver damage e.g excessive alcohol use.

You may wish to contact the British Liver Trust and they have a nurse helpline number on 0800 652 7330 and their website is: britishlivertrust.org.uk/in...

The waiting is the worst, not knowing what happens next, but do make contact with the British liver trust who may also be able to advise.

Kind regards

The Roy Castle support team

beesgood profile image
beesgood

hi - also had elevated bilirubin levels (stage 4 nsclc on pembrolizumbab) - they rose over a few blood tests and treatments.

Pembro can be ‘hard’ on your liver, kidneys and thyroid so worth keeping an eye on all of these….

I made radical diet changes to really ease the food and drink my liver was exposed to and basically gave my liver the healthiest liver diet possible for 3 months… bilirubin levels came down.

I Cut out all processed food, drank a lot of lemon and ginger based drinks, lots of fresh liver friendly smoothies etc and it worked for me.

Rebeccaannerose profile image
Rebeccaannerose in reply tobeesgood

Thank you that is very encouraging 😊

Stopgap123 profile image
Stopgap123

Hi, try not too worry, I know that’s easy to say but they may halve his dose of his next immunotherapy and in the meantime beesgood has given fab advice re: diet, no alcohol etc. A nutritionist told me that for the liver to heal, just drink warm filtered (if possible) water and eat a rainbow diet.

Rebeccaannerose profile image
Rebeccaannerose in reply toStopgap123

thank you 😊

Justbreathe67 profile image
Justbreathe67

Hi I have Gilbert's syndrome which means my bilirubin is always raised. strangely, though, it only ever went really high while I was on chemo once. Now I'm on targeted therapy it's just back to my normal. As others have mentioned lots of water a good diet, and plenty of rest if possible, these things help if I'm showing symptoms! Good luck.

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