The Roy Castle Lung Cancer Foundation
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Changing from crizotinib to ceritinib

My husband is about to change from crizotinib to ceritinib and I was wondering if anyone else had done this. I would be grateful for any advice on side effects, effectiveness etc of ceritinib and how it compares to crizotinib. I’m hoping the changeover will be smooth especially with Christmas round the corner.

Thanks for reading this post.

Hope everyone is doing well and you all have a great festive period.

Jan xx

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Hi Jan, I have never had crizotinib but have been on ceritinib for 3 months and this has proved very successful in reducing the tumours I have. At first I struggled to cope with the side effects but now am coping well. Not everyone gets the same side effects, I found that it effected my taste and smell for a while but that has settled down now. The worst thing for me is the diarrhoea, which happens twice or three times a week, but only in the mornings , which helps me to manage it. Like I say, not everyone gets the same side effects , Ivam told to expect a rash but fortunately I don’t have one.

Good luck with the new tablets, have a good Christmas!

Terry xx

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Hi Everyone,

I just spotted the comment about diarrhoea. I'm on Gefitinib and after finally listening to my wife's advice (why did it take me so long?) I am doing very well by taking one 2 mg Loperamide tablet every other day as a matter of routine and not just when I've had a terrible time in the loo, which used to be every few days ... usually in the evening in my case. Not a nice topic, but if this helps anyone, it's worth mentioning.

All the best,

Neil

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Hi neil

It seems that diarrhoea is a side effect of a lot of the drugs. Glad you’ve got it sorted now.

Pleased to hear you finally listened to your wife’s advice. My husband is just the same but we get there eventually! 😃

Enjoy Christmas.

Jan.

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Hi SueD_1 my wife is also on Gefitinib and gets diarrhoea as well which i feel she is doing fairly well its just certain foods and drinks would bring on coughing my wife margaret was dia eg nose with cancerios turmor in september 2016 which they operated and removed but she was not fit for chemo but their was nodels round the lung and about 6 months ago they said that the cancer had returned and it was termial and i ask how long she had they said without the tablet 6 months and with it they cant tell so if anybody has imformation about being Gefitinib it greatful ps sorry about all the spelling

Michael

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Thank you Terry. The side effects sound pretty much the same as the ones you get on crizotinib. My husband has been on that for two years and as expected it seems he has become resistant to it so time for a change.

Have a good Christmas.

Jan.

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Has he joined the Alk positive facebook group as there are 700 plus members and lots of information about different drugs?

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Hello Mikest1,

Can you help me with the Facebook address for the ALK positive page please?

Thanks

Terry

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Hi Terry the website is alkpositive.org/

Hope you find it useful. Wishing you all the best. Where do you live? I am in Bucks.

Regards Mike

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Thanks Mike, I am in Chelmsford, Essex

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Terry, do you mind telling me when you take your tablets? Steve takes 5 tablets before going to bed. It seems the only convenient time because of the 2 hrs before and 2 hrs after fasting rule which is a pain!

Thanks.

Happy 2018!

Jan x

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Hi Jan, Apologies if I have replied already, I thought I had but can see no evidence on the thread. I take the tablets early in the morning ( 7am) and wait until 9 am before eating breakfast. I hope Steve is getting on with them ok, happy new year to both of you! x

Terry

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Hi Terry. I sent a reply to you about an hour ago but like you I can’t see it anywhere. Very strange! Sorry if it appears twice. Thanks for the info. Steve takes his tablets before going to bed and his main problem is diarrhoea and feeling a little nauseous, which deadens his appetite. He felt much better when he was on crizotinib and we are hoping that side effects from ceritinib lessen over time and we can get back to a better quality of life again. The one good thing about the ceritinib is that his back pain is much improved.

Hope you are still doing well.

Happy new year to you too.

Regards

Jan.

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Hi Jan,

I am sure in time Steve will get used to Cerinitib, the tablets are big aren’t they! My appetite came back eventually; one tip, if the food tastes bland with the first mouthful, perservere as the taste buds seem to wake up during the meal! . I still seem to be ok at the moment with no scan planned yet, going back to work for the first time since September next week. Don’t hesitate to ask any questions as time passes,

Regards

Terry

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Hello nannyjanny, as you can see from the previous replies most people have tolerated ceritnib with managable side effects.

I have added a link to the cancer research website which has a lisit of side effects which you may experience,

cancerresearchuk.org/about-...

You should also avoid grapefruit and grapefruit juice may interact with ceritinib and lead to unwanted side effects. Avoid the use of grapefruit products while taking ceritnib.

Many drugs can interact with ceritinib. This includes prescription and over-the-counter medicines, vitamins, and herbal products. Tell your doctor about all your current medicines and any medicine you start or stop using.

I hope that his change to the new medication is smooth, if you would like to speak with someone please give us a call on our nurse led helpline free phone 0800 358 7200

Kind regards

Roy Castle Help line

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Hi Jan. Good to hear from you. I'm still plodding along on Crizotinib - it's now 3.5 years. They're not quite sure why it's still being effective but it may be down to the fact I had the primary removed when they took my lung away. I'm sure at some stage I will have to change drugs. My consultant has told me that Ceritinib is a better drug and it will probably be the next one for me. Hope it all goes well for Steve.

Best wishes to you both.

Alison and Colin.

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Hi Alison and Colin.

Glad to hear all’s still going well for you. 3.5 years on crizotinib is great.

I can’t believe Steve has been on crizotinib for just over 2 years.

Yes, I’ve heard that ceritinib is a good drug. New ones are coming all the time which is good news for everyone.

Have a good Christmas.

Best wishes to you both from us both.

Jan and Steve

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Hi Jan and Steve.

Hope you both had a nice festive break.

There I was saying I had been on Crizotinib for 3.5 years when lo and behold it's been decided I'm to switch to Ceritinib.

The reason being that whilst Crizotinib has controlled the tumours in my body I've had a recurrence of a cerebral metastatic tumour in my brain. By all accounts, Crizotinib has no effect on the brain, hence the change.

Whilst I'm to start on the new drug shortly I have at some time in the near future to undergo gamma knife treatment which proved successful the last time they found a brain tumour back in 2014.

Can I ask if Steve is experiencing any side effects with the new drug ? If so, have you found the need to change his diet in anyway ?

Take care.

Alison and Colin.

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Hello Alison and Colin.

So you’ll be starting on the ceritinib journey too! We hope it goes well for you.

The main thing Steve gets is spasmodic diarrhoea and sometimes a nauseous feeling. It’s early days yet so we’re hoping that these side effects get less over time as they did with crizotinib. Also, Steve is not great at taking tablets and the capsules are quite big and the dose is 5 at the same time (well one after the other!). Steve takes them before bedtime as it is the most convenient time due to the fasting regime of 2 hours before taking them and 2 hours after. Steve hasn’t really altered his diet but has gone off certain things. Also, at the beginning he had a funny taste in his mouth but that seems to have gone now. The side effects seem to be very similar to crizotinib.

We’re hoping that ceritinib works for a good amount of time, and hope you have success with it too and have few side effects.

Keep us posted on how you get on with it and any tips are always useful. You were very helpful to us when Steve started crizotinib.

Take care, keep smiling and a happy new year to you both from us both.

Jan and Steve

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Hi Jan and Steve.

Thanks for coming back so soon. I picked up my tablets this afternoon so will start tomorrow. Will, of course, keep you up to date with any developments.

Ah well, here's to the next leg of our journey....

Best wishes to you both.

Alison and Colin.

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Good luck! Yes, on with our lives on the roller coaster!

Best wishes from us both x

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Hi Alison and Colin

Just wondered how you are getting on with ceritinib? Hope it’s going well for you.

Best wishes

Jan and Steve

X

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Hello Jan and Steve. Good to hear from you both.

Now, where do I start ? Taking Ceritinib has not gone to plan, unfortunately. My consultant started me on the maximum dose of 750mg which I believe is the usual dosage. I would concur that they are rather large capsules ! I started taking the tablets before going to bed in line with comments made on this forum. I got the usual side effects but the indigestion caused me to switch to taking the capsules at 7 in the morning. After 3 weeks I felt really unwell and a blood test taken after 4 weeks revealed I was in acute liver failure. As a result I had to come off the drugs immediately. It has now been nearly 4 weeks since I stopped taking the ceritinib and have had weekly blood tests. My last blood test showed by bloods were nearly back to normal so the intention is for me to restart taking ceritinib from next Monday with a reduced dosage of 600mg.

Fingers crossed the lower dose suits me better.

Hope Steve is feeling well.

Take care.

Alison and Colin.

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Hello Colin and Alison

We’re so sorry about your problems and really hope that things improve for you and that the lower dose suits you.

The reason I haven’t been in touch before is because we have been going through exactly the same thing. I am sitting here re reading your message thinking it’s a message I’ve sent to you! Unbelievable. The time scale etc. is the same from start to finish. Steve’s bloods were going down enough for him to re start ceritinib on a 600mg dose a couple of weeks ago and he is due for another blood test on Tuesday and appointment on Wednesday to see how it’s going. He’s not feeling too bad now but in all the six years and various treatments he’s had over that time I’ve never seen him so ill and it sounds the same for you. Like you we had such high hopes when Steve started on ceritinib. I think there needs to be a bit more research into the bad side effects and maybe a smaller dose should be administered at the start.

Please let us know how you get on. We’re keeping our fingers crossed for you.

Take care both of you!!

Best wishes

Jan and Steve

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Hello Jan and Steve.

How spooky. I know what you mean about coming on this site and worrying people. It is obviously more toxic than Crizotinib but it has the benefit of working across the brain which due to my previous brain tumours was deemed a necessary evil.

My consultant was shocked by how unwell I was with Ceritinib given I had coped so well with Crizotinib.

Let's hope for both our sakes the new reduced dose works.

Here's hoping for all of us that we can get back on an even keel. Keep in touch and stay strong.

Alison and Colin.

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Hi Jan and Steve.

Just thought I’d ask how Steve was ? I started the lower dose on Monday and it’s obviously early days, but so far so good.

Really hope that all is going well.

Take care.

Alison and Colin

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Hi Alison and Colin.

Thanks for asking about Steve. When we went for the appointment on Wednesday his bloods showed that his levels are still going down so he’s staying on the reduced dose of ceritinib for now. He’s feeling a lot better than he was.

How are you getting on with your reduced dose? We hope it suits you better and all goes well for you.

Keep us posted.

All the best to you both.

Jan and Steve

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Hello Jan and Steve. That's good news.

As I said, it's early days but apart from the well documented side effects, I feel okay. Due to see my consultant on Monday to discuss my bloods so I'm hoping, like Steve, that my levels are improving.

You never know, perhaps this time the dosage will suit us both and we can get back to some sort of normality.

Had to cancel our holiday arrangements and everything on hold until we know where all this is leading us. Going to miss the sun but heh Ho it's all part of life's rich pageant.

Take care.

Alison and Colin.

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Hi Jan and Steve.

Just thought I’d check in and see how Steve is.

I’ve just finished 3 weeks on the reduced dosage and I’m glad to report that my bloods are normal and my liver is unaffected.

I’m not due to see my consultant for a couple more weeks but I’m hoping she will agree to my having a break in the sun from the beginning of next month.

Really hope Steve is progressing well.

Take care the both of you.

Alison and Colin.

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Hello Alison and Colin

Pleased to hear your bloods are ok and your liver is not affected. Hope you are feeling much better now and your consultant agrees to a holiday for you. Some sunshine would certainly be nice.

We have just been to the Lake District for a week and Steve was allowed to have a week off his tablets while we were away. It certainly made a big difference and we were able to enjoy the break.

The main problem is still the gastric side effects and we’ve had a clinic appointment today and our consultant suggests that Steve has a week on and a week off the tablets to see how that works for him. Bloods were back to normal.

Steve will have a scan before his next appointment in 3 weeks so we’ll see how the drug is working.

Hope things continue to go well for you.

Take care.

Speak again soon.

Jan and Steve

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Hello Jan and Steve.

Not long back from seeing consultant. Not great news. Whilst my liver is ok it appears I'm heading towards kidney failure. I have religiously been drinking 2 litres of liquid each day, as instructed. Unfortunately, what with having diarrhoea every few days it seems my consumption has not been enough. ( I do feel we are still learning as we go with this drug ).

Suffice to say, I have been told to stop taking Ceritinib for a week ( sound familiar ) and increase my daily intake of liquid to 3 litres ( back to the chemo days ). It is hoped that by next Monday when I see the consultant again my kidney results will have improved.

If that is the case going forward I might have to take Imodium ( other products are available ) along with the Ceritinib at night to hopefully put off the onset of diarrhoea and the dehydration that comes with it. We shall have to wait and see.

My consultant is hopeful things will settle down and we will be able to get away at sometime. She knows the benefits of vitamin D...

Glad to hear that you and Steve managed to get away and you had a good time.

I've got my brain MRI tomorrow so onwards and upwards as they say. Never a dull moment....

Take care. Hope Steves scan goes well.

Alison and Colin.

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Hello Alison and Colin

Good to hear from you but we are sorry your news is not better.

We hope you are soon able to find the right dosage of ceritinib and are able to get away for some much needed sunshine.

Hope your MRI goes well with good results for you. How long do you have to wait for the results? Scanxiety never gets easier does it!?

We’re hopeful that the week on, week off will be the right combination for Steve. The Prof has also recommended that Steve takes loperamide before he takes the ceritinib as a preventative for the diarrhoea. It's all a matter of experimenting at the moment.

Look forward to hearing from you again with good news.

Look after yourselves.

Jan and Steve

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Hi jan and Steve.

That was a quick response, as is mine. Just sitting here before I go up to London for MRI - will get results next Thursday..

My consultant suggested the taking of diarrhoea relief tablets with ceritinib as well. Will start that process next week provided there is improvement in my kidney results.

Can I ask, does Steve take loperamide a couple of hours before taking ceritinib or at some other time ?

Not sure if good weather has reached you yet but v sunny where we are. Perhaps a few days in the back garden / up at the allotment will have to suffice..

Take care the pair of you.

Alison and Colin x

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Hello Both

Just a quick reply re the loperamide.

As Steve is going on a one week on and one week off regime the Prof suggested that Steve takes one loperamide a couple of hours before the ceritinib on the day he restarts.

Steve took his ceritinib last night and will now be off them for a week so when he restarts he will try the recommendation by the Prof and see how it works.

It is all trial and error at the moment for getting right balance. Too many loperamide has the opposite effect which is also not good! We’ll keep you posted as I’m sure you will us.

Have a good journey to London

All the best

Jan and Steve

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Hello Jan and Steve.

Thanks for update on loperamide.

Would it be possible to have the name of your professor and the hospital from where he works. I’m not sure if you are his only patient on ceritinib but I know from my end, I am my consultants only patient on this current treatment.

It may be that your consultant may have more patient based knowledge of this treatment.

Kind regards

Alison and Colin x

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Hi Colin and Alison

Steve's consultant is Professor Dean Fennell and he is at Leicester Royal Infirmary. We've been very happy with him. He's very knowledgeable and into lots of research and clinical trials. Plus he's very approachable and puts you at ease as well as explaining everything fully. Hope this is of some help to you.

Hope all's well.

Best wishes.

Jan and Steve

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Hello Alison and Colin

Just to say we hope your MRI went well and had a good outcome and things are going ok.

Still a few issues to sort out when we go to clinic next Wednesday. We’ll all get it sorted eventually I expect!

Hope you’re both well otherwise.

Best wishes

Jan and Steve

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Hello Jan and Steve.

Good to hear from you.

Eventually got mri results today by phone after a wasted journey to Guys last week ( results not ready due to chronic lack of radiographers ). All looks ok but will need to have another scan in a couple of months - this time with contrast.

Otherwise, getting on with ceritinib and occasional loperamide.

Hope you get issues resolved.

Take care

Alison and Colin

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Hello Alison and Colin

Good news about your MRI results, even though you had a wasted journey and a longer wait. Also pleased to hear that you’re getting on ok with ceritinib.

Steve has gone back to taking the drug every week as after a few days of stopping it each time his back pain flared up so he is persevering with it and getting used to it a little more and the side effects don’t seem to be quite as bad.

We are still waiting for the scan appointment as unfortunately it hadn’t been requested but hopefully it has been now!

Take care both of you.

Look forward to hearing your next update.

Best wishes

Jan and Steve

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Hi Jan and Steve.

As always, good to hear from you both.

Hope things settle down at your end.

I’ve been back on ceritinib for just over 2 weeks now but my creatinine levels have been high so I’m having to drink 4 litres each day in order to get levels on an even keel. Not an easy task, let me tell you. It seems I’m either drinking or going to the toilet !

Got some blood results yesterday which suggest all of my hard work is paying off and my consultant will let me know on Monday if it is ok for me to have a scan (with contrast ) as I haven’t been able to have one due to my kidney problems.

Think I’m controlling the loperamide side of things so side effects, like Steve, not as bad. Be glad when things get back on an even keel. Put all thoughts of a break on hold until I’m stable. Will have to put up with our weather in meantime but at least we can keep an eye on our allotment...

Take care the pair of you.

Alison and Colin x

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Hello Alison and Colin

Hope things are improving with you. Have you been able to have a scan with contrast yet? Is a holiday in sight?

Steve had his scan last Wednesday and we’ve had an appointment this morning and all is still stable which is good.

We’re off to Llandudno again for a long weekend so we’re looking forward to that. We’re going to see the Dusty Springfield Musical, Son of a Preacher Man, to celebrate 50 years since our first date! We played those records all the time then so it’s very fitting.

Keep in touch with your news which we hope is good.

Take care both of you.

Jan and Steve

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Hello Jan and Steve. Great to hear from you.

Hope you had a lovely weekend. It sounds like a lot of fun !

I’m hoping that Steve’s scan was fine and he is progressing well.

I saw my consultant on Monday and,to be honest, I hadn’t been feeling too good albeit my blood results suggested otherwise. She believed that my body was gradually accepting the drugs and that things would only get better. She even agreed that I could reduce my daily liquid intake from nearly 5 litres to 4. Doesn’t seem a lot but it has such an effect on my sleeping patterns and my appetite ( bloating ).

Imagine my surprise when she phoned me on Tuesday to say that Novartis ( ceritinib manufacturers ) had called her to say that recent studies had proven that a lower dose was now acceptable and that the drug could be taken with food... this means I am now on 3 tablets (450g) a day and I take after dinner.

It’s early days but the stomach aches I was getting in the early hours of the morning now seem to have relented, due I believe to the fact I am not taking the drug on an empty stomach.

She also agreed that I could further reduce my daily liquid consumption to 3 litres. I’m hoping that these changes will mean less sleep deprivation, a healthier appetite and a general overall better feeling.

Flights are booked for early September by which time I’m hopeful I will be on an even keel. In the meantime, our allotment is keeping us busy and the current spate of good weather can only help my vitamin D levels.

Have a CT scan booked for the end of this month and an MRI for my brain mid July. Fingers crossed both will be okay.

Keep in touch and enjoy the summer.

Best wishes to you both.

Alison and Colin.

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Hi Colin and Alison

We were just wondering how things are going for you.

Hope you are feeling better and getting used to the drug now and the lower dose with food is suiting you. Also hope the scan and MRI go well and that you are soon jetting off to the sun, although we have plenty of that here at present.

Steve’s feeling a lot better at the moment and we’ve just returned from a week in Dawlish which was lovely and relaxing.

Enjoy your allotment in the sunshine. Plenty of watering to do I’m sure.

Keep us posted on your progress etc.

Take care

Very best wishes

Jan and Steve

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Hi Jan and Steve.

Sorry for delay in getting back to you. Really pleased that Steve is doing well and that you have enjoyed a nice break.

Saw my consultant yesterday to discuss the results of my body ct scan and brain mri. I’m pleased to say that both were positive in as much as the tumours in my body have stabilised and of the 2 brain tumours, one has disappeared and the other has shrunk considerably.

She is very happy with my progress and the dosage seems to be producing the required results. I’m also pleased to say that the usual side effects are diminishing.

On the negative side, both Alison and I have had a virus for the best part of 3 weeks. I’ve had a 2 week course of steroids that has improved matters and we both are now feeling a lot better.

I’m due to see my consultant on the 3rd September and we are due to go away on the 5th. She sees no reason why we should not have a holiday so all being well we will be jetting off to Kefalonia early September.....

Hope you’re enjoying the sun albeit we could do with a downpour as the allotment is suffering in these parched conditions.

Take care.

Best wishes to you both.

Alison and Colin x

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