I have been on Ibrutinib for almost 6 years since 2018 after two sessions of chemo, stopped due to goldbadder removal. I started with 480 mg then after two years down to 280 and another two years down to 140 mg. I have been asked to join STATIC trial, or rahter stop taking Ibrutinib and see what happens. I am searching to see how others have coped when they stopped Ibrutinib. How soon the CLL can come back? I would welcome the stopage as my muscles ache, I am stiff and getting depression? Isn't that one of the side affects? Ibrutinib has been very good to me, maybe it is time that I stop. I am seeking answers as I need to make up my mind in a week. Thanks,
The stoppage will help as I will need cataract surgery soon plus knee replacement in the near future. I am most concerned how soon can the CLL come back and will resuming Ibrutinib simply put it in remission again. My blood coiunts have been pretty good, the latest from 09/11/23
WBC 5.1, Lymphocites 1.4, Haemoglobin 122, Platelets 111, GFR 54, Thanks for response.
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jkl700
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Hi I am about to finish the flair trial, ibrutinib 6 years. I am going onto static soon where. I will be randomised to continuously using ibrutinib or coming off on an intermittent basis. If off ibrutinib arm and bloods change I go back onto ibrutinib. If I went back to Watch & wait I wouldn’t get ibrutinib or any other treatment until my CLL progressed substantially. I don’t know if this helps you or not?
Thank you for your response. I am still confused how this will work for me. I thought I was being offered to go off of it, but the literature says I wouldn't know which one I was on? I am waiting to see my consultant next week, who is the principle investigator at West Middlesex Hospital. I understand your if off Ibrutinib and bloods change you will go back to Ibrutinib.. When and how would you go back to Watch and wait. Anxious to hear from you again,
They say if Ibrutinib is taken for long periods the CLL is more likely to become resistant to the treatment. But I don't understand why they say they need 800 patients to take part in the trial. I will know more when i talk to the consultant next week. Please see responce to the person after you who replied to my questons. Thanks for responding.
The literature will say that as it applies to everyone. In your case if you need to come off ibrutinib for now you will be added to the intermittent group, off until your bloods show you need ibrutinib again. That’s my understanding but best to check with your consultant.
I was on flair trial, completed 6 years. Went back on watch and wait and 19 months later my nos were going in the wrong direction and lymph nodes swollen so now I'm on V&R since October. Good luck with whatever you decide to do. Sue
I stopped taking Ibrutinib last year February because I had become intolerant to it. For the first 6 months I had to have monthly blood tests in order to see whether the cancer was returning rapidly. So that was clearly one of the possibilities my haematologist was considering. However, the blood tests remained excellent and then he wanted me to have a blood test once every three months. I had one done in December and it was still excellent. I also feel much better than I have for years. Hopefully we can continue for a while longer like this. Then when the cancer returns he will prescribe Acalabrutinib.
Of course the blood tests are not the only way of checking, but there is also no palpable increase of the lymph nodes and as I said already I have been feeling very well.
I was offered the static trial, but Ibrutinib stopped working before it started.When they totally stopped giving me ibrutinib I had a massive flair around neck, but I think my blood count was pretty bad by then. If your bloods are good I think you’ll be fine, good look with your decision
Hi jKl700. Your post is of interest to me personally. Recently I posted “Ibrutinib Stopped” in which I detailed my own 10 year experience from trial to stopping the treatment which may be of interest to you.
I do intend to post an update after my next haematology appointment and blood results.
However, from what I have learnt regarding Ibrutinib is that there is now a feeling that the med should be stopped after 5 years or so due to side effects.
The reason my treatment was stopped was given as the “risk of cardiac toxicity”.
At this moment the only noticeable benefit from stopping Ibrutinib is that my nails have recovered from the constant splitting which of course I am happy about, but as I said I will await the outcome of my next appointment to see if there is any lasting benefit.
I should add that I have been informed if and when treatment commences it will not be with Ibrutinib but with one of the newer generation of CLL drugs.
I also stopped Ibrutinib at Christmas because aFib was discovered. Awaiting more input from cardiology. Nails also greatly improved and so enjoying Seville orange marmalade !
I will also be interested to hear your next treatment suggestions.
Thank you Sandy. I did try ordinary orange marmalade but they didn’t have that lovely sharp taste. Too late this year but look out for bergamots. I had a jar a couple of years ago and it was delicious. Next year I will try to make my own bergamot marmalade 🤞
Not only due to side effects, but mainly because CLL more likely will become resistant to Ibrutinib. As I wrote earlier to another post, we are chosen in random for the static trial. But my point is that I want to stop Ibrutinib. My consultant will clarify that this coming Thursday.. I think I have seen your previous post. I will look at it again. You have been through a lot. It also depends on one's age. I am 81 now. But feel like in my 6os. Not recentlhy though. I feel tires and I think depression as well.
I concur with many of the points you make. I too wanted to come off the Ibrutinib or at least have a break from it just to see if the side effects would reduce, but every time I raised the issue I was either told it’s working for you or you may loose the future funding for the drug.
However, because I had pre-existing conditions it was often suggested that they were the problem.
And again like yourself I’m only in my 30s in my mind that is, but 75 in the real world.
My regards and hope you get some positive response’s.
Hi Mouseygirl, many thanks for your message. It is of interest to know that your mum’s Ibrutinib was stopped because of cardio issues, which does seem to be the main reason to stop the treatment.
I send you and your mum my best wishes for a good outcome with her future treatment.
THANK YOU ALL FOR YOUR RESPONSES. I will try responding to each separately or another communal one when I talk to my consultant in a week on Feb 8. Before then I may get hold of the person who is coordinating the STATIC trial at West Middlesex hospital in London. Many thanks again for all your responses. I should get on this site more often.
I recall at one time back in 2018 or so I was given an antibiotic which clashed with Ibrutinib. I was so surprised that the Dr. and not the consultant knew nothing about the clash. I was lucky to come across the clash on this site. Luckily I had stopped the Ibrutinib instinctively. Anytime I need the anitbiotic I make sure to ask for Co-Amoxiclav 500/125 mg. That is the one which does not clash with Ibrutinib, at least for me.
While waiting for the Static trial to start, I stopped Ibrutinib for approx 6 months, once my 6 years of the flair trail came to an end. I was then randomised to start Ibrutinib again. I have found that I have many more side affects since returning to Ibrutinib and would have preferred to have stayed on with out a "break", I have only stoped previously for back surgery and an endoscopy. I think possibly your disease genetic make up also determines your "second" treatment path on the NHS? Hope you get some clear information from your consultant. You could ring the clinical trial nurse at your haematology department and they may be able to supply you with some pre appointment information to aid you in your decision ?
I always say to any GP please check for any contras to Ibrutinib before prescribing me anything. It is very easy because a traffic light colour system comes up on their screen. Don’t forget that most GP’s and pharmacists don’t know how to spell Ibrutinib let alone know the contras. Co-amoxiclav is fairly strong. My first go to is Azithromycin.
Hi again Colette, like you I always raise the issue of contraindications of the meds I am prescribed.
As I was suffering from pre-existing immune condition before I was diagnosed with CLL and on permanent anticoagulation therapy and reacted badly to a medication that caused massive bleeding requiring hospitalisation, that was back in my teen’s.
Since then I have always been cautious of new medications, for example the antibiotics, Amoxaclav and Azithromycin did not agree with me.
However, I do take Co-trimoxasol as a prophylactic and have done throughout my treatment without any adverse effects.
But where possible I still try to avoid taking unnecessary medications and always pose the question to my doctors “do I really need this?”
It’s interesting just how different we all are. I have never had a reaction to an antibiotic ( Co -trimoxasol seems to be a common one and itching several years ago was seen as the culprit but I wasn’t convinced ) but at Christmas I got a terrible chest/sinus infection and took the emergency supply of co-amoxiclav that immunology suggested I keep. After about a week I had to stop because of terrible itching and sleepless nights. The Fexofenadine I was given for the itching cured it but gave me terrible constipation. I have taken both before with no side effects, so I am going to be very wary of any new drugs.
Exactly, and I am unusually organised for me and I write down everything I am given, when and what for. I saw a new consultant recently and he was impressed at my list and my knowledge, but sadly we need to stay informed.
I can't wait to see the result of these intermittent BTK inhibitor trials. How good it would be to take one for 3 months and then pause. And then take it again for 3 months and pause again. Or something like that.
72 years old male. I had to stop Ibrutinib due to afib 4 years ago. My labs were good and my hematologist told me that he would follow me on no treatment. CLL hasn’t come back yet!
I've been on Imbruvica since Feb 2018. I had to stop it for skin cancer removal and injection for back pain just this passed month. By the 6th day off my lymph nodes behind my ears popped out. By the 7th more popped out. But after going back on for 2 days they disappeared. I see my cll specialist on the 14th so I'll be telling him. Wishing you the best. Cindi
Thank you. How sudden and quick it came back where as the person before you has been off it for 4 years. My confuison is that the study says we are chosen randomly for the trial. But my point is that I do want to stop. I suppose my consultant will clarify this by next week.
I told my cll specialist 3 months ago that this happened before. That's when he told me to let him know if it happens because it's not suppose to do that. So maybe something with me personally is going on. So I'll see what he says next week. Cindi
Hi jkl700, I stopped taking Ibrutinib almost 2 years ago after 8 years on the med. I had read on here that some of us (including W00dfin above) had stopped Ibrutinib treatment without too many adverse effects so I persuaded my heamatologist at the Marsden to let me have a treatment break. My bloods have been great for 22 months now and I'm seen in clinic every 3 months. Good luck.
Hello SycamoreN Thank you for your post. WOW, you have broken the record, 8 years, wow, the most I have seen on this site has been 6 years like mine. so even the 8 years didn't have an adverse effect on you. That is what I want to do now, simply stop and be monitored. I don't want the STATIC trial, not knowing which group they will put me in. Thanks again. Tell me more when you get a chnace. No hurry. I am meeting my consultant at West Middlesex hospital this Thursday Feb 8.
Hi SycamoreN, your story echoes mine as I too started Ibrutinib 10 years ago, also at the Royal Marsden.
As a consequence of failed chemo, FCR, BR and radiotherapy for an enormous spleen I was accepted for treatment during the last year of the Ibrutinib trial on compassionate grounds, this was before as I’m sure you already know the drug was approved for use in the UK by Nice.
I have only recently had the Ibrutinib treatment stopped due to the risk of cardio toxicity so It’s still too early to assess if any of my ongoing symptoms are related to the Ibrutinib or some other pre-existing condition.
Apart from greatly improved nails, no more splitting, I will wait and see how my next haematology appointment goes and the results of my blood test’s before given an update.
Lastly were you ever seen by Dr Dearden at the Marsden?
as you mentioned, our experiences with Ibrutinib are ver similar. I too initially got Ibrutinib on compassionate grounds but in Oxford after FCR only gave me a year’s remission. I later transferred to London. I saw Dr Dearden for my first consultation at the Marsden and since then I’ve been seeing Dr Iyengar. Who’s your consultant?
I hope your symptoms subside now that you’ve stopped treatment.
I thank you for your response and must apologise for the late reply.
Yes, we do have much in common with regards to our CLL journey, 10 years or so, on Ibrutinib and treatment at the Royal Marsden.
I was treated at the Marsden for 6 years and then requested a transfer back to my local hospital after Ibrutinib was approved by Nice.
I am still treated at the Marsden for my dermatology as they have dealt with my previous skin cancer issues and continue to monitor me.
Again, like yourself, I asked for treatment to be stopped because of the side effects were making my pre-existing symptoms of Behcets worse, this was early on in the trial.
I had a couple of months rest from the treatment but it didn’t really achieve much, I was then back on 420mg then reduced to 280mg which I remained on for most of my treatment.
It was only when a new haematologist suggested stopping the treatment because of the risk of cardio toxicity, I was already showing erratic BP and occasional AF.
At the moment I’m still receiving my regular IVIG infusions, which have continued to protect me from repeated chest infections, I had previously been hospitalised 15 times with Pneumonia and 4 episodes of Sepsis.
However, it’s now close to 4 months since the Ibrutinib was stopped and I can’t really claim to have any improvement in respect of any of the side effects apart from the nail issues which have now normalised but I am now more breathless.
In truth I’m not expecting any real improvement in any of my joint pain or arthritis to result from the withdrawal of the Ibrutinib and must accept that my Behcets is the cause even though I was informed that the Leukaemia had dampened down the Behcets.
I am of course still interested in how you and other CLL sufferers respond to the stopping of treatment and the outcomes on the side effects.
In the meantime I send you my best wishes for a successful outcome to your treatment.
Hello again. Please see my new post today. You wrote: so I persuaded my heamatologist at the Marsden to let me have a treatment break. So the consultant was able to stop your treatment without any trial? That is exactly what I want to do, but I got the impression from the coordinator that the consultant mau not be able to do that without a trial. Waiting for your response please. Thanks.
Yes, my consultant agreed to my request to stop my treatment without me having to be in any trials. However, it took a lot of persuasion to get him to agree. I insisted that if I was supposed to be “in remission “ and all my bloods were in normal, then I didn’t see why I should continue taking Ibrutinib with the cardiac risks involved. He agreed with me in the end and also agreed to monitor me every 3 months.
Many thanks for your quick responze. One more question please. Did you actually take a test to confirm remission or your blood results were sufficient? All my blood numbers are pretty good. I will write more when I find out how to Private message you as suggested. Cheers.
Thanks. I searched and still don't know how to do private message. I typed the question in the search box and nothing happens. I was at the cataract clinic today and the consultant thinks my cataract is mild and she wouildn't rush for surgery especially that I have good vision in the right eye.
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I have also been on Ibrutinib for almost 6 yrs and currently on 140mg daily. My doctor suggested going off since I am in remission for approx 2 yrs. I asked to lower dosage to 70mg and continue with the med. It has been good to me with minimal side effects and don't want to chance CLL coming back with a vengeance. That's my thinking right now but of course, subject to change.
Thanks. Yours is an interesting one. Are yuou actually taking 70mg? I thought the lowest tablets were 140. What do you mean by remission? If my blood njumbers are good does that mean i am in remission too? Waiting to hear from you.
I'm waiting for the RX to be filled at the pharmacy. The 70 mg tab is available in the US. Not sure if it is in the UK. I have good blood numbers. I have also had flow cytometry and Closeq tests which detect cll cells at 1 in 1million which put me in the undetectable level. This is why my onc is suggesting stopping the medication. You can request these additional tests with your oncologist to see if you are in remission.
Wow, thank you for that so interesting post. I will for sure enquire from ny consultant. I am in London and this is the first time bear about such tests. I had suggested that I take the 140mg every other day where her reply was, that would make CLL resistant ot Ibrutinib. Taking it everyday wiill more likely do that. Anuyway the nurse is calling me tomorrow to discuss the trial. I don't want a trial, I just want to stop. Many thanks again. I will post here the result of m y talk. Cheers.
Thanks zaax, But you wouldn't know which group you will be in, as they are chosen randomly; that's what is confusing me. I want to stop it period after 6 years, and I hate ending up in the group that takes it for another 3 years at least, the min years of the initial trial. Have you been given the 40 page of STATIC pamphlet? Well, I will be talking to the nurse and some points will be clarified I hope.
STATIC trial or not. Shall I join the trial of Ibrutinib.
OK, I am back with more news. I've talked to the coordinator a great deal and here is what I understand. I still need to talk to the consultant this Thursdy. I thought one had the choice to simply stop and be monitored, apparentlhy not. I am curious to hear from the few who were off it for two years, how that was arranged. The consultant may not be able to take me off of it just like that.
If i join the t rial, then at least I have a 50% chance of being on the intermittent one, going off of it and being monitored. If not, then I shall be on the continuous one, which is not that ideal for me. Plus if I decline to accept the continuous treatment, then I may simply be discharged and sent back to the GP. Or if I continue as is, then the coordinator says why not join the trial.
Another interesting point is the nature of the Ibrutinib, which could be either in the tablet form or a capsule form. Is the capsule form the generic brand of the original Ibrutinib? The coordinate did not know. I understand how expensive the drug is and it will help us all if the charges can be reduced.
I am anxiously waiting to hear from you all as soon as possible. I am very curious to hear how those people who were off of the drug for two years, how they managed that? Was it a trial or simply the consultant agreed to take them off the drug and still monitor them.
I am greatfully waiting for your comments. Many thanks.
As far as I am aware the capsule is only 420 which I was on until recently and the tablets came in multiples of 140 so when I started I took 3 a day. 70mg is a new one for me.
This is me again, jkl700. Confused how to start a new post.
Should I join STATIC trial after being on Ibrutinib for almost 6 years.
I did talk to my consultant. She tells me that in UK you can go off Ibrutinib no more than 6 weeks without joining the trial. Should then CLL come back after 6 weeks, NICE will not permit you to go back on Ibrutinib. You will need to start on some other treatment. However, if I do join the trial you may be lucky to be on the intermittent team. However, if you are chosen on the continuous team, you will still have the chance to refuse the trial and come back continuing on your regular course.
What to do? I have postponed my decision for now, and I am continuing on my regular course of 140mg a day until further decision.
If acceptable, after 2 months of treatment, I would like to stop the one tablet a day for the last month of the three month treatment and see if it makes any difference. If acceptable.
Any suggestions? Please. My blood numbers are very good. But I feel tired, depressed? and have continjuous muscle weekness and back ache. And recentlhy feel out of breath when walking fast. Of coiurse I need to mention that I am 81.5, but don't feel it. But it is slowly creeping at on me.
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