Atrial Fibrillation

[JohnNo6024]

Hello. I have been reading posts for a long time but never actually posted myself so here goes. I have been living with CLL since 2011 following a routine blood test. I saw Haematologist and was placed on watch and wait. In 2016 I had my first treatment with Bendamustine and Rituximab and was in remission until 2020 when further treatment was required. I was prescribed Venetoclax for 24 months with six initial sessions of Rituximab. I tolerated the tablets well but had to stop after 22 months with the side effects as toxicity levels increased. I became neutropeanic at this time I was in hospital with frequent infections and treatment for sepsis. I remained in remission until January 2025 at which time I was prescribed Calquence. I have just completed my first cycle and I have been most unwell a few days after starting treatment with Gastric problems, headache and feeling weak and exhausted and needing to lie down a lot during the day. Over the last couple of days I have been suffering from periodic raised heart beat which is pounding at 120bpm. My Apple Watch ECG app tells me it is AF. I am finding it difficult to cope with all these side effects but the Hospitsl has told me to keep going as it is a good drug for treating CLL but in some cases it can make you feel worse before eventually making you feel a lot better. So I am being obedient and “keeping going” until I can’t continue or I start to feel a lot better. I would welcome some encouragement and how these side effects can be managed. Peace to all from Farj

[AussieNeil Partner Administrator]

Your hospital is right about Calquence (acalabrutinib) side effects improving over time (with the exception of the risk of rising blood pressure). You are also right to be concerned about those Atrial Fibrillation (AF) watch reports, because while there is about half the AF risk with second generation BTKi drugs acalabrutinib and zanubrutinib, there is still an increased risk of it developing. That comes with subsequent cardiovascular risks which may need to be mitigated by supportive medication and perhaps cardioversion. I'd recommend logging your watch reported AF incidents and following the reports up with your consultant. That could result in an ECG and possibly wearing a holter monitor for a couple of days. mayoclinic.org/tests-proced... to check what's happening.

Neil

[Walkingtall62]

Hi, I am not medically trained. When I first started Calquence I was given other medication to take alongside. Have you been given anything else to take? Do you have a good consultant/specialist that you see? Take care

[mrsjsmith]

Further to Neil’s excellent answer I would also suggest you ask for a referral to Cardiology who may want to put you on blood thinners. After an episode I had just over a year ago I was taken off Ibrutinib, and doing fine so far 🤞

Colette

[CoachVera55]

I was on 1/2 dose of Acalabrutinib 100mg daily for 10.5 weeks after 2 weeks of full dose Zanubrutinib. And yes that 14 day headache & generalized bone pain definitely required adjustment. I didn’t last long because I had an untreated respiratory infection & I felt tremendous chest pressure with palpitations on Acalabrutinib.

I stopped Acalabrutinib & on day 4 I suffered with Rigors. So my thinking was that Zanubrutinib has the best reduction option so I went on 1/4 dosage 80mg Daily. It maintained my numbers & slowly dropped my WBC count by 10 every 1-2 months.

We did do a 72hr Holter Monitor during the treatment transition & my 3rd case of chest pain with an Emergency Room Visit, all in the first 3 months. This 4th CT Scan was the only negative one because the other 3 showed; 1)Pleurisy, 2)Left Pleural Effusion with Pneumonia vs Aetelectasis & 3)Bilateral Parenchymal Scarring. Through out all the signs & symptoms 4 doctors refused to prescribe antibiotics. I got antibiotics from my Boss’s doctor & I improved.

I met & started with my CLL Specialist & she assigned me to see her own Pulmonologist & Cardiologist team. I was on 1/4 dose Zanubrutinib & after 3 months of testing I healed & we increased to half dose, 80mg every 12hrs. I got another respiratory infection but this time it was treated promptly & I stayed on 1/2 dose for 6 months straight.

I had to stop after 13 months mainly due to chestpain & extreme bone pain. I’m 9 months off treatment & even my CLL Specialist agreed that we stop on time 🙌🏾

I completed a 90 day Cardiac Rehab Program, 3 days per week X60min. I had to push for it & I loved it. I had Lung, Heart & Stomach issues with the BTKs.

I loved Zanubrutinib because of the reduction options & its a very effective drug. Less chances for cardiac issues of the three. Definitely get that Cardiac Referral & Evaluation sooner than later. #GODSPEED 🙏🏾

[yazbe]

Agree with Colette and Neil--a referral to a cardiologist experienced in CLL meds is warranted given the stroke risk associated with AF. See link to NIH article below.

I sailed along on Ibrutinib for 4+ years and woke in the middle of the night with horrible chest pain just before Thanksgiving 2024. After repeated testing, dx was pericarditis. Two nights later, a feeling like my heart was beating out of my chest-->back to the ER. Dx AF. Heart rate 150, BP 150/110. Many doc/ER visits and testing later, was started on colchicine for pericarditis and toprol, eliquis, and flecainide for AF. My CLL doc changed me to zanubrutinib--so far, so good.

Wishing you the best! Here's the article: ncbi.nlm.nih.gov/books/NBK5...

Beth

[W00dfin]

My afib was diagnosed by my family physician during a routine wellness check. I was referred to a cardiologist the next day. I developed afib after 2 1/2 years of Ibrutinib and my hematologist immediately stopped treatment. According to my research this side effect occurs in 16% of ibrutinib patients. My afib did not resolve after wearing a heart monitor for 30 days and my cardiologist performed the cardioversion procedure which successfully treated the afib.

Best wishes from the States!

[cajunjeff]

Hello JohnNo. Its possible that a lot of your symptoms like feeling weak, exhausted and having to lay down, are related to afib.

Most all btk drugs carry a risk of afib, although the risk is thought to be less with calquence.

I think the first thing to do on that front is to see a cardiologist to confirm if you have afib. Afib can be very treatable, particularly if caught early. There is a saying with afib that “afib begets afib”. That just means that the more you have afib, the more episodes you get, making it harder to treat. Thats why you might consider seeing a cardiologist as soon as possible and get on afib meds immediately, if you have afib, to stop the progression. That a wristwatch can diagnose afib sounds futuristic and amazing. But its best a doctor confirm that diagnosis, there can other rythym issues with the heart that treat differently than afib.

Afib is initially treated with a variety of meds that work either on the rate or the rhythm of the heart. If the medications do not work, an ablation is the next step where, in very simple terms, the doctor ablates areas of the heart to disrupt rogue electrical signals that cause the heart to beat irregularly. That irregular heartbeat can make one fatigued and exhausted as you describe. Ablations to the heart are routine procedures that can be done outpatient in some cases.

Assuming you do have afib, possibly triggered by calquence, it’s a good idea to discuss options with your Cll doctor. He might switch to another drug, lower your dose or just leave you on calquence if your afib is well controlled. Your cll doctor would probably leave treatment of your afib to your cardiologist.

Some of the problems you describe might not be related to afib and could need further investigation. Bu I think the starting point is seeing if you have afib and getting treatment for it right away. I am not a doctor, but learned a lot helping my dad manage his afib. I cannot stress enough the importance of taking care of it right away. Each episode one has of afib, makes the next episode more likely. Afib rarely heals on its own, rather it is progressive. The further along it gets untreated, the harder it is to treat.

All that said, afib can be managed. There are drugs that very well afib if caught early. Ablations for afib have a high success rate and the bonus of getting off afib meds in some cases.

Once you get your afib under control, if you have afib, you can see how many problems that resolves for you and address the remaining issues. Good luck.

[Sunrisejoy]

Hello and hope you begin feeling better! I am in permanent afib now for a few years and just began calquence 3 weeks ago. I have fleeting headaches/left temple area & feel some indigestion. (Nothing yet that is severe & still on 1 pill per day until follow up tomorrow).

I write because being on a blood thinner is important for us in afib. And also to say that I am on blood thinner & calquence and doing well as far as bruising (healing quickly if I inadvertantly get one, etc).

I also reply to wish you well & for hope that once a couple months out...the side effects diminish as many say they do!! 🙏🏼🤞🏻👋🏻

SJ~