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CLL Support Association
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Imbruvica and Heart Issues

I have been taking Imbruvica for five months and my blood counts, while not good, have remained staple. I had Afib prior to starting Imbruvica but it has worsen over the last month, causing 4 shocks from my Defibrillator/Pacemaker in a two week period. As a result, my Oncologist wants to take me off Imbruvica. My Cardiologist has prescribed Sotalol (a high end beta blocker) to control the Afib and Flutter. He says that my type of arrhythmia is common for elderly people and he sees no reason to stop my Imbruvica medicine, since the combination of the beta blocker and my Defibrillator, will correct any unusual heart activity. I now have to make the decision as to whether continue Imbruvica or try a more potent chemo drip for my CLL like Rituxan, or a combination of Rituxan with Bendamustine, which have a long list of other side effects. Any advice?

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Look into idelalisib and Rituxan, it has no heart issues, and if properly used with prophylactic and monitored it was very good after I failed Imbruvica (ibrutinib) due to bleed and A.fib/anticoagulant issues...

Brought my counts into line after about 10 months...

~chris

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Thanks Chris. Very helpful. John

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Another option to discussion with your oncologist is your dose of Ibrutinib. A recent study reported on this site shows good efficacy with Ibrutinib at 1/4 the normal dose. My oncologist has been prescribing Ibrutinib this way for a long time and gets less adverse effects than reported normally, including A-fib.

I was his first patient on it and we started me a very low doses to avoid taxing my liver. But I was able to get fully efficacy at low doses. Everyone is somewhat different and I remain at a lower dose that his other patients, but he used my experience to advantage with his other patients. He would be willing to talk to your oncologist on this subject if that proves of interest to your doc.

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Thanks for your reply. Very helpful. I am on a low dose now, 140 mg every other day. I think the four recent shocks from the Defibrillator has concerned the oncologist, but my new beta blocker (Sotalol) may take care of this. John

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You could discuss ablation of the afib. It’s done similar to a cardiac cath with an introducer in the groin and a catheter threaded up to the left atrium where they use electricity to ablate the aberrant conduction pathway

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Thanks for your reply. Ablation has been discussed as an option by my cardiologists. They are hoping the beta blocker (Sotalol) works first, before doing the heart surgery. John

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I had a similar experience with Imbruvica plus it was causing numbness in my limbs and my doc switched me to Ventoclax which has worked well. My WBC counts dropped to normal range within a couple weeks. Pretty amazing.

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Paul: Thanks for your reply. Very helpful. I will certainly discuss the use of Ventoclax with my oncologist. John

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how bad was that experience ? I am asking as i have experienced some on my feet , but doen´t seem important to me . Bedises that, i have almost no side effects , my lymphs have dissapeared , WCC is geting lower , my HMG i higher , no heart issues , mild diarreha a couple of times , some heartburn sometimes, easy to deal with .... RCC is good , platelets almost normal...... I work , make a normal life . Almost 2 Months on Ibrutinib....

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What about Venetoclax?

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It’s a similar drug as imbuvica but newer. It’s a good alternative. I’ve had fewer side effects and unlike imbuvica it started working immediately. I’ve been on it for 15 months and now only take 50mg. The regular dose is 400mg. Sometimes less is better - for me anyway. After about 8 months in I started to get fatigue and muscle weakness, so they have decreased my dosage each visit and my counts have been remarkably stable/good - normal range. I’m back at MDA this week for a check up and expect good news.

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Venetoclax is an oral drug, like Ibrutinib, but it inhibits BCL-2 rather than being a BTK inhibitor. Like you, I get help from Venetoclax, but at an even lower dose. For me, it is in addition to my Ibrutinib and other protocol elements that are not standard. All people are different. Some respond to lower doses well and this produces less side effects. But all such determinations require careful monitoring with the guide of one's oncologist. Drugs that work too fast are dangerous by themselves. A dose that is too small to be effective will not inhibit CLL enough.

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Thank you - I’m waiting to go onto venetoclax having “failed” ibrutinib- I can’t understand why I wasn’t given a smaller dose, which I’ve asked about but nit really had an answer. I will keep in mind what you say when I next see my specialist and tell him what you’ve said- many thanks for this and keep well

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I had the same experience with Imbruvica. The oncologist started me with 3 pills a day and it caused all kinds of side effects. I was off the drug for 6 months to recover. Then he started me again on 1 pill a day and eventually 1 pill every other day, but the heart issues surfaced and I had to go off this drug. These drugs are potent and need careful monitoring. John

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Hi...you might look into an acalabrutinib trial... it a more targeted BTK and might be an effective alternative. I have been on acalabrutinib for two years without many side effects...only mild headache and some minimal joint pain...I am 68 and this is my first treatment.

Terry dx 2012

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Unmutated

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Terry: Thanks for your reply. I will definitely mention acalabrutinib to my oncologist. Sounds promising. John

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Hi John

Not sure I can help, but I, too, had Afib while on Imb., which soon led to an ablation, then to a TMVR to repair a damaged mitral valve.

I switched to acalabrutinib (Calquence) 2+ months ago - good results so far, but too early to really tell. As TPETRO says, a trial may be your best option, but my CLL doc prescribed it "off-label" (it's now only FDA-approved for MCL), and Astra-Zeneca's "AZ&ME"department agreed to send me free Calquence, providing my CLL doc would justify its use by letter (he easily did b'cause of my heart probs. with Imb.), and my income was below the 400% of US poverty level or just under $69,000.

Good luck, whatever you do.

Gary

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Thanks Gary: I am looking for some alternative to Imbruvica and your experience with Calquence sounds

promising. I have an appointment in 10 days with my oncologist and will mention this drug to him. Thanks again. John

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I am 79 and was treated with R/B this year at Emory. Only side effect was intermittent fatigue, requiring two 1 hour naps daily, and a short term appetite loss cured with ice cream. Am in remission after treatment, but don't know for how long. I have no heart condition, but have PAD in legs, which required 2 stents in abdomen, requiring platelet infusions before R/B treatment. I was fearful before R/B treatment, but the treatment itself was a piece of cake.

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