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
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
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
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.
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
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.
Has he joined the Alk positive facebook group as there are 700 plus members and lots of information about different drugs?
Hello Mikest1,
Can you help me with the Facebook address for the ALK positive page please?
Thanks
Terry
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
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
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
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.
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
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
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.
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
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.
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
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.
Good luck! Yes, on with our lives on the roller coaster!
Best wishes from us both x
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
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.
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
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.
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
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
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.
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.
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
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.
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
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
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
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
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
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
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
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
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
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
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.
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
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
Hi Alison and Colin
We’ve not heard from you for a while and we hope everything is going well for you.
We’ve had a few ups and downs but all’s ok here at the moment.
It would be good to hear from you when you have a spare minute.
Best wishes to you both as always.
Jan and Steve
X
Hi Jan and Steve. Great to hear from you.
A bit like Steve, it’s all been a bit up and down. Managed to get away as we mentioned but, unfortunately, due to return home tomorrow... still taking 3 tablets after my evening meal and having the usual consequences, especially on holiday.
Not due to see consultant until beginning of next month. Don’t think I will have any further scans until after Xmas ( it was all a bit traumatic last year when they discovered brain tumours week before the festivities ).
Take care.
Alison and Colin x
Hi both
Good to hear from you and pleased to hear you’re enjoying your break and that things are ticking along fairly reasonably for you.
We were thinking about you at the weekend as we were visiting my cousin who lives in Blackheath. Her son goes to St. Olaves College in Orpington.
Steve had an appointment this morning and his scan result was stable and his liver levels had reduced since last month so good news. Kidney levels up slightly so needs to drink more water!!
Liver levels and the stomach problems seem to be the major problems, although since starting on the 3 tablets the gastro problems haven’t been as bad. A bit unpredictable though which can sometimes make life interesting.
Enjoy the rest of your holiday and have a safe journey home,
Take care.
Jan and Steve
X
Hi Jan and Steve.
Now safely home. Good to hear Steve is progressing well. I must admit I probably didn’t drink as much water as I should have on holiday so not sure what my next blood results will show. I hasten to add I didn’t drink much alcohol either.
It’s a small world. We’re not far from St Olaves and one of our nephews attended there. It’s got a very good reputation. He did go to university with high grades and at one time was training to be a surgeon but it proved too much and he is now training to be an accountant.
Keep in touch and enjoy the winter months.
Alison and Colin xx
Hello Alison and Colin
Happy new year, if it’s not too late to wish you that. We hope you had a good Christmas and that all’s going well with you
Things have been a bit variable here over the last few months but seem to be on an even keel at the moment.
Steve’s just had a stable scan result which is good news and is still on the 450mg dose of ceritinib.
It would be good to hear your news when you have time.
Best wishes to you both
Jan and Steve
X
Hi Alison and Colin
It’s a while since we’ve been in touch and we were wondering how you are. How are you getting on taking the lower dose (450mg)?
You must be looking forward to your holiday in the sun although we’ve certainly had plenty of sun here over the last few weeks.
We've just returned from 2 weeks in Sheringham where we had a lovely time and Steve was feeling quite well apart from the bouts of ceritinib induced diarrhoea which is a nuisance and has no particular pattern to it.
When Steve went to clinic before we went away his kidney function was down so he’s been drinking lots of water to combat it. We’ve been to clinic this morning and as Steve is feeling much better we were surprised to hear that his liver function had risen again. He is to have a week off the tablets and hopefully that will bring the levels down and he will start on the lower dose of 450mg.
Hope you’ve been enjoying the summer and managed to keep cool.
Look forward to hearing how you’re progressing.
Happy holidays.
Best wishes to you both
Jan and Steve
X
Hi. I'm new here, recently changed from Crizotinib to Ceritinib after liver troubles. I take 3 tablets at bedtime. I'm getting diarrhoea, exhaustion, difficulty breathing, a weird taste, and a burning sensation on the soles of my feet, but apparently the tumour is shrinking.
I am not allowed to drink much fluid, just a litre a day, as I recently started dialysis, so I imagine that this low fluid intake is exacerbating my side effects.
I've just been advised to take a week off the drug, and see how I feel, as, because I started dialysis and the drug at the same time, it's hard to know which is causing which symptom.
Anyhow, I'll keep you posted. Good luck to everyone else.
Hi there,
I am about to change drugs as well, after having five doses of radiotherapy in the base of my spine next week.
I’d be interested to know how you’re getting on.
Thank you, Joan
Hi there Joan, and everyone else.
Latest on my Ceritinib is that it's working really well on the tumour, I've been taking 3 tablets with breakfast, and the diarrhea has improved immensely, but I've been very nauseous. Next time I see the consultant I'll enquire about anti nausea medication, in the meantime I'm trying ginger tea. I'm also going to experiment with taking the Ceritinib with my evening meal, in the hope that I can then sleep through the nausea. I used to take it last thing at night on an empty stomach, and didn't have too much of a nausea problem then, but the middle of the night diarrhea was pretty bad, so maybe I just didn't notice the nausea in comparison.
My liver function is hovering just within the upper limits, so they're keeping me on the drug for now.
Fingers crossed
Caz
🤞🏻
I’m having opposite problems with the painkillers so I was hoping they’d cancel each other out!
Very useful advice, Caz, thank you.
Joan
I’ve been taking 750gm ceritinib for nearly three weeks and after a very easy start (only being sick twice and diarrhoea twice) I was very glad to have an easier time than when on crizotinib. However, I have been sick for the last three days, more or less three hours after having the drug. Is that long enough for any benefit to be given?
I enjoy reading about other folks being able to go on holiday as I am currently in a wheelchair or in bed. The cancer cells in the foot of my spine, which have been zapped by radiotherapy, still give me sone sciatica symptoms. I try not to to bend at the waist or knee. If I go into spasm it’s excruciating. In the wheelchair, I sit awkwardly while keeping my legs out.
I am hoping the radiotherapy is still working but it seems to have plateaued. As I am on painkillers, alcohol is a no no.
Having read about taking the drug in the evening, I think I should change from the morning as I do currently. Thanks for these replies.
Hello Jabb-Uk
Sorry to hear you’re not feeling so good.
My husband Steve takes his tablets just before going to bed so he can sleep through most of the immediate side effects. The gastric effects are not great on this drug and crizotinib was kinder.
Steve was started on 750mg and became quite poorly as his liver was badly affected. Had a break and went back on 600 mg. It started to affect his liver again, although not as badly, so another break and back on 450mg (3 tabs) a day which he seems to be tolerating better.
However, over the last few weeks we have found out that Novartis, the drug manufacturer, have stated that the starting dose should now be 450mg taken with or just after food and NOT a higher dose on the fasting regime due to the toxicity of the drug.
Please do check this out with your consultant as the lower dose is far more tolerable and seems to be as effective too.
Take care
Jan
Your posts have been very informative if not a little scary. I’m due to start on Ceritinib shortly but my consultant has made out that the side effects are not severe. ( I suffered in a major way with nausea and diarrhoea during chemo) and am petrified of going through that again. I hope it’s not as bad as it seems as I just want some quality time with my family.
Hi BellaBe
I hope my posts have been more informative and helpful than scary! Not everyone has the same side effects, if any! You will be monitored regularly with blood tests etc and anything untoward will be sorted out. Don’t be afraid to give it a try as results are good and you may well be ok on ceritinib and if it doesn’t suit you there are other drugs out there now.
We’ve had several holidays etc. this year and we are enjoying life with our family, which includes 5 grandchildren, now that Steve is on the right dose for him. It is worth persevering with.
Good luck to you and enjoy your quality time with your family. Let us know how things are going for you.
Best wishes
Jan
Hi Jan and Steve.
Happy New Year to you too......
Things ticking over at this end. Had mri last week for my brain and due ct scan on Monday for chest / abdo. Hoping they will both be clear and then we can get on with booking flights to Kefalonia.
Must admit what with all the initial trials and tribulations with taking ceritinib, taking 450mg with evening meal seems to be working well.
I’ll let you know how my scans were.
Take care.
Alison and Colin x
Hi Colin and Alison
We’ve not heard anything from you in a while and wondered how things are going for you.
Steve’s not too bad at the moment, apart from a bit of a cough. He’s still on the 450mg dose of ceritinib.
Take care.
Best wishes to you both.
Jan and Steve
Hello Jan and Steve.
Great to hear from you both. Nothing much to report I’m afraid, which, given our situation is good news. I’m now on annual chest / abdo scan and 6 monthly for my brain.
Saw consultant end of last month and apart from being anaemic ( recurring issue), all is okay.
Just back from our annual trip to kefalonia and now busy with our allotment.
Take care.
Alison and Colin x
Hi everyone, I’m currently on the 450 mg dose 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?
Stage 4 ALK positive Mutation - on Crizotinib
Pemetrexed seems not to work
