Ceritinib Query

[BellaBe]

Hi everyone, I’m currently on the 450 mg dose of Ceritinib with food and have been for the last 4 months. I take mine in the morning but do suffer with stomach cramps, diarrhoea and nausea for several hours after. Yesterday I tried taking it before I went to bed, I woke up 4 hours later with the same symptoms but 50 times worse, I couldn’t believe it. Needless to say I am going back to taking it in the morning. It’s really frustrating as I just want to function normally. Has anyone else had the awful night reaction? It was as bad as chemo. My last scan showed Ceritinib is working, I would just love to improve my quality of life while taking it. Any suggestions would be gratefully received xxxx Also does anyone know of anyone taking a lower dose than 450mg which is still effective?

[Bow-19]

Just wondered if you have the ALK Positive mutation and that is why you are taking ceretinib. If so I am ALK Positive too. In addition to this page there is also an ALK Positive UK Group and a Worldwide Group both accessed via Facebook. It’s definitely worth joining those too as there is advice about ceretinib there. If you look at my previous posts you will see the links. Hope you join x

[Daisy_Chain_12345 in reply to Bow-19]

Hi Bow-19

Would you be able to let me know the info for the worldwide alk group as I can’t seem to find it on Facebook. Thank you x

[Bow-19 in reply to Daisy_Chain_12345]

It’s alkpositive.org

[Bow-19 in reply to Daisy_Chain_12345]

Sorry for the delay replying, I have had no internet access for a few days. If you click on the link below, it will hopefully work! If not, please let me know. There is also a U.K. group if you are interested? X

[Daisy_Chain_12345 in reply to Bow-19]

Thank you - I’ll join both groups x

[Bow-19 in reply to Daisy_Chain_12345]

The U.K. one is alkpositive.org.uk I hope you find them as useful as I have x

[Bow-19 in reply to Bow-19]

alkpositive.org.uk

[Bow-19]

This will link you to the alkpositive.org.uk web page. Please take a look x

[Lifesab]

Hello BellaBe.

Sorry to hear of your problems. Obviously we are all learning as we go along but from my point of view, I’ve been on ceritinib for about 15 months. I find taking my medication straight after my evening meal works for me. I know it is difficult but it took me approximately 6 months to get to where I am now which is the occasional side effect, such as occasional diarrhoea or nausea. It seems that the body finally accepts the drug but it may vary from person to person when it comes to time. I’m not sure if you are taking any other medication ( apart from anti sickness and anti diarrhoea ) but I found omeprazole very helpful. I also found snacking essential, especially between meals and last thing at night.

With regard to the dosage I am on 450mg and have been told that is the optimum dose. Personally, I have not heard of anyone on a lower dosage.

I hope things improve for you as soon as possible.

Take care.

Colin.

[Odiehound]

Hi I've been on ceritinib since July 18, take it at night with my evening meal, don't usually get problems over night but regular diarrhoea in the morning and during the day, sometimes get stomach cramps but all manageable and I think it can depend on what I've had for dinner. I'm on 450mg and working well for me, so far. I have heard of people lowering dose if unable to tolerate it, but you need to discuss with your oncologist. Are you All positive great advice on the website and Facebook group. Take care xxxx

[BellaBe]

Hi Bow, yes I’m ALK positive I think we’ve been in touch before!

I really appreciate your replies Lifesab & Odiehound.

My oncologist said that my body should start to get used to it so it’s good to know that it does happen to others. I was starting to lose heart,I guess it’s about tweaking everything to make it more manageable. I’ve definitely taken some of your suggestions on board Lifesab, you’ve been most helpful. Well, here’s to making things better soon! Thanks again xxx Bella

[Lifesab]

BellaBe. So pleased I could be of help. It does help to talk. Here’s hoping the future only contains good news.

Take care.

Colin.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear BellaBe

Sorry to hear of the side effects you are having whilst taking your Ceritinib. Do discuss with either your pharmacist or GP/ Specialist/ lung cancer nurse of what you are experiencing. You may need a review of your symptoms by the specialist and they may decide to either revaluate the management of your side effects or modify your dose to a more tolerable level.

It is worth noting if you have started taking any other medications either over the counter or herbal, the pharmacist is a great source for reviewing this.

This link is information on Ceritinib (which you may already have):

medicines.org.uk/emc/files/...

Cancer research UK also provide information on this:

cancerresearchuk.org/about-...

If you wish to discuss anything you can call us on our Freephone nurse led helpline on 0800 358 7200

All the very best

The Roy Castle Support Team