I have been on Imbrutinib for 20 months with great success until I developed AFIB 5 months ago. My Cardiologist said it was a direct side effect of the Imbrutinib. I has really clamped my lifestyle.
Has anyone else experienced this, and what was the recommendation of your Oncologist.?
I developed AFib after 5 months on ibrutinib in a clinical trial with Gazyva. I spent five days in the hospital waiting for the ibrutinib to clear my system before they could treat me with a large dose of amiodarone which got my heart rate down from 180 to 40 within seconds. I was released with a prescription of metoprolol (50mg) which I am expected to take indefinitely. My CLL docs then had me re-start the ibrutinib, slowly ramping up to the full 420mg dose over 5 days and reducing the metoprolol to 25mg. It's been 3 months and I'm on both ibrutinib and metoprolol and doing fine. If I develop AFib again, they tell me they'll dose-reduce the ibrutinib. Then if I develop AFib a third time, they'll have to take me off completely. That's my experience, but we are all different. You should consult your CLL specialist and a cardiologist and have them coordinate your treatment together based on your unique situation.
I suggest checking with your doctor about switching to Acalabrutinib (Calquence). Patients (including several members of this forum) often find less incidence of AFIB and skin disorders on it versus Ibrutinib. Acalabrutinib is FDA approved for Mantle Cell Lymphoma and (at least in the U.S.) can be prescribed 'off label' for CLL. I switched to it 2 months ago.
Best of luck,
Bill
I have Atfib. My rate is about 96. When I started I had it on and off but for the first five years it was 55. After a hip replacement it went up because they changed my blood pressure medication, my BP was too low. They sent me to an Atfib specialist, they increased my BP medication and put me on 30mg,of Edoxabam to thin the blood in case of heart attack or stroke. It remains around 95-100. An unfortunate symptom of a life saving drug. I am seven years in on Ibrutinib, all levels are normal, no other symptoms and I live a normal life as I head towards my eighties.
Yes, I have it as well from Ibr. First you need to meet with a Cardiologist to get a raft of test, including stress test and either a MRI or cat scan with differential. With that report you can determine with your CLL doctor if you should get off ibr altogether and try something else.
I have noticed at night that if I sleep on my right side, I have less palpitations. Sometimes I get up in the middle of the night and sit in a upright lounge chair, do some deep meditation and then fall back to sleep.
I have never stopped working out, in fact I notice I have less palpitations when I do work out. Everyone is different, I will probably stop taking IBR in the next 3 or 4 months and try something else.
Good Luck to us!
barger1951
Hello 👋
I believe everyone should sleep on their right side of the body so as to not crush the heart.
you might get more personal experience reports if your post were locked for privacy.
A study has shown Ibrutinib to be effective at 70 mg/day. My oncologist had all his patients at that dose. None have A-fib. Only about 13 patients, so not enough to establish less A-fib with good statistics, but certainly a good hint. I personally, received good efficacy with less than that.
My suggestion is that you work with both you cardiologist and oncologist and think about experimenting with a significantly lower dose to see if you can thread the needle to get fully efficacy and no A-fib. You would be a bit of a pioneer, as I do not think there have been large scale trials yet to check this. My oncologist's results are not published, but the published study of about 25 people likely also reports adverse effects. You and your docs can review their data.
The suggestion of Acalabrutinib above is also a decent suggestion. It is effective and so far has demonstrated less A-fib. But it also has not been around as long. Those who get A-fib usually take almost 2 years to show such symptoms.
We don’t have that dosage here.
Usual starting dose is 420 mg every 24 hrs and dosage is reduced if intolerance is reached.
Imbruvica is to be taken until disease progression
You are correct. My Ibrutinib comes in capsules that each have 140 mg. Often the standard dose here is 560 mg/ day, that is 4 capsules.But 420 is also normal. I mis-wrote when I said 70 mg was used in the study and for the patients of my oncologist. I should have said 140 mg/day.
I personally have managed @ 70 mg/day on average, but that is a case study of one and not with Ibrutinib alone. I take a combination of a lot of stuff, including Venetoclax, Chinese Medicine and off-label drugs.
But my suggestion for someone with A-fib resulting from Ibrutinib to discuss with his docs the idea to try a lower dose still holds. There may be a dose that reduces CLL without triggering A-fib.
Per below, I mis-stated the dose for the study of lower than normal doses. The patients in the study took 140 mg per day and received full efficacy, as did about 12 other patients of my Onc.
Thank you for making that correction re the Ibruitinib capsule dose.
This approach may be OK for you personally as you have an oncologist who is prepared to work with you and it sounds as though that includes prescribing drugs off label. However, I am concerned that others, who do not have the same expert support, may try your suggestions on their own and would like to give some words of caution.
There is definitely a lack of strong information/evidence regarding dose reduction of Ibrutinib at various stages of remission induction or control although some is starting to come through anecdotally.
Some of the things to consider are the patient's weight and tumour burden. Personally I would be concerned about the risk of losing control over my CLL and that the lower dose may enable resistant clones to develop which would make regaining control again more difficult.
Many patients successfully manage their AF and continue Ibruitnib with no problems. This requires good communication and understanding between the patient's cardiologist and CLL specialist. I would have thought that all will have seen and managed this side effect.
Of course treatment is a personal choice and if people are struggling with the toxicities (side effects or financial) then, as you have said, I would encourage them to discuss dose reduction with their CLL expert. Please do not risk the do it yourself method.
Jackie
I would like to echo and underline Jackie cautions. No one should mess around with dose experiments on anything without professional monitoring and advice. And no one knows if a sub-optimum dose of something like Ibrutinib can allow resistance to grow and create a more robust breed of cancer cells. It is not smart to give cancer cells a vaccine.
That emphasized, as Jackie points out, we are all different in weight, age, gender, co-morbidities, metabolism, diet, lifestyle, etc. and may have different genetic make up of our CLL. What works for me may not work for someone else. Yet, it is also true that the trials which establish dosage result in the same dose recommended for everyone. That can also result in a mismatch for an individual.
Someone with proven adverse effects has a special reason to work with their medical team to explore if a different dose will provide a better compromise between benefits and risks from the treatment. AEs and efficacy needs to be monitored for sure. I also hold that this is really true for all of us. The recommended dose is a good guide, but it is not optimum for everyone.
My own starting dose of Ibrutinib proved to be what I could tolerate in terms of non life threatening AEs. These were fever, aches, diarrhea, etc. These symptoms, which I could self monitor, also proved to be safe as verified by Chemistry Panel Tests. Efficacy was shown by both WBC decreases (after first increasing) and shrinking nodes that I could palpate. This was something useful for me and my oncologist to know about me. But it certainly had also something to do with the other off-label drugs and Chinese Medicine I was using.
My own tumor load is down by over 98% from its peak over 4 years ago. This estimate is per my WBC, and size of my spleen and nodes. In more recent times, I have increased my dose of Ibrutinib and added some Venetoclax in the hope of clearing the what CLL remains.
I no longer need to be concerned about killing CLL cells too fast for my liver to safely clear or that more Ibrutinib will create uncomfortable side symptoms because of processing dead cells too fast. If there are sub-clones that are more resistant to Ibrutinib, we do not want let them run. So we have turned up the heat on them so to speak.
But when I started Ibrutinib, the normal recommended dose would have been somewhat to much for me, even without worrying about stuff like A-fib. We all want a proper balance between the risks of the disease and the risks of the treatments. We need to have professional guidance for this. But lets be honest. Nobody really can be certain where the right balance is, even if they have "MD" after their name.
I am not medically trained. I did work as a R&D product development scientist in Silicon Valley for many decades. I have more confidence than most in interpreting data and designing experiments. Because of this and his experience with me for over more than a decade, my oncologist developed a trust of me and gave me more rope than his other patients. After a while, he welcomed my "deviate" nature, but he always backed me up with testing and constant evaluation.
My oncologist retired last week and thanked me for doing better than most of his similar patients and actually helping him develop better guidance for some other patients. I doubt if my next oncologist will be quick to consider me part of his team. But being stable and in decent condition is nice place to start with an new oncologist.
15 years ago no honest oncologist expected me to be alive now. The outlook for us CLLers is more optimistic now. Somehow I managed to hang on just long enough for the landscape to change. Someone's prayers were answered. I just do not know which holy friend pulled the necessary strings. I do hope I can find the proper things to do with the extra time I have been given.
But I have no expectations of earning my reprieve. I am just somewhat in awe and thankful for it.
I have been thinking along those same lines, that I do not need the full dose. I think I will start taking less or get off the drug altogether and try something else. Thanks for your reply!
Please note Jackie's reply to you and me. You need profession guidance and monitoring, even if a lower dose is optimum for you. I also expanded on Jackie's comment.
That is interesting...
The typical prescribed dose that my Oncologist has worked with in his CLL patients is 420mg or (3) 140 mg caplets. I wonder how he prescribed 70mg? I will be seeing my Oncologist in 10 days and will be pushing for a lower dose. My Cardiologist has already spoken to him about that.
Thanks
Please read the corrections by tsvieps and jm954's response. Good to see that you have your Cardiologist and Oncologist talking. Read CLL specialist Dr Richard Furman's concerns about patients attempting dose reduction without medical oversight here: healthunlocked.com/cllsuppo...
I again want to affirm Jackie's and AussieNeil's comments. I was not running off on my own. That is simply not safe. But I will try to answer your question.
I was the first patient of my oncologist on Ibrutinib. He did not really prescribe 70 mg to me. In fact my prescription was for 4 x 140 mg daily.
But I had previously been give a MAB to reduce my CLL load which was causing me severe anemia. I responded too quickly to it, even though it was started as a low entry dose that was much less than usual. So we were both sensitive that I could react faster than most people and I could endanger my liver if Ibrutinib reduced my large tumor load too quickly.
I said simply said I would start much more slowly than the recommended dose to see my reaction and he did not strongly object. I found that @ 70 mg/day, I had as much reaction as I could manage in terms of fever, intestinal issues and body aches, even though my Chemistry panel did not show life threatening dangers. He did not suggest my experiment; he just realized that I planned to be deviant because I was previously endangered by reacting too well to standard recommendations on a totally different drug.
My efficacy was as good as reported for patients in trials. After a jump in WBC, which was first a surprise in the trials, my WBC slowly retreated from 350k. But right away my nodes started to shrink and fairly soon my spleen which had reached 4 X normal size.
It was working well and safe for me, so I just stayed with this sneak up dose for quite a long time, but I have escalated my dose more recently as I had less CLL targets available. None of my oncologist's other patients were ever prescribed 70 mg. As mentioned elsewhere, I also had and have a protocol of other drugs that are off-label for CLL, such as Metformin, and Chinese herbs that target some cell processes similar to the BTK target of Ibrutinib.
But after my experience, my oncologist did starting prescribing "I" @ 140 mg to start other patients and found full efficacy and no serious AEs. All this started just as a caution, but proved out sufficient. Recently a fairly small controlled study of 140 mg has been reported in a journal that had similar results. My oncologist was not reporting into that study; his data is not published.
In spite of the published study, 3 x 140 mg or 4 x 140 mg remains standard. No other oncologist in the same practice as my oncologist--there are about eight--followed the example. They may have smiled at the nice results, but they considered these results anecdotal. And they are correct.
That said, I think there is now a basis for a patient to suggest to her/his oncologist that they too try such an experiment and together monitor for efficacy. Less AEs and efficacy are a reasonable outcome. But such an experiment needs to be monitored and not done without real time supervision. Please do not just run off on your own and find out 6 months later that you CLL is running instead of decreasing.
I have had Afib for a number of years prior to being diagnosed with CLL. It is not outrageous. The medicines my cardiologist has me on control the pulse numbers from the 50s-90's. It is known that Imbruvica and my heart meds do not jive well but I must take the Imbruvica as it is working. So the doctors watch the conditions.
Thanks to all for feedback and sharing your experiences with AFIB and Imbrutinib. Lots of personal developments since I posted 10 days ago.
The first week of the new year I went down with the raging cold/flu that I caught from my grandson. I was up 4 nights in a row violently coughing, as you cannot take most over the counter medications with AFIB. With my Oncologists' knowledge I temporarily suspended Imbrutinib. In any case, my heart rate hovered at 156 - 171 BPM for over 5 days and I finally went to the Emergency room at a cardiac facility near me and was admitted on Sunday. After 6 hours on a Cardazon drip to lower my heart rate (with minimal results), the EP Physician performed an Atrial Ablation on Monday to control my Atrial Flutter.
I feel great now. Heart ticking along at 63 BPM.
My Oncologist is in the same medical group as the Cardiologist, they have spoken, and he is open to lowering my dose on Imbrutinib, as he feels the full dose is driving the AFIB and Atrial flutter.
I am 66, athletic, and never had heart issues before September 2017. I agree with TSIEVPS and others, do not choose to lower your doses on your own.
I would also encourage you not to "tolerate" AFIB as I did, but to force your medical professionals to team up and understand your individual case for early recommendations or changes to your meds before you make a trip to the ER like I did.
I get to visit both doctors this week for a follow up and may have more to recommend next week.
Namor1al
Ibrutinib and Anti-Inflammatories
Temporarily lowering dosage
Obenetuzimab and Venetoclax
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