Imbruvica and Afib, is there an alternative? - CLL Support

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Imbruvica and Afib, is there an alternative?

Irishgreek profile image
28 Replies

There has been a suggestion that my Afib is directly related to ny Imbruvica. The Imbruvica has worked wonders on my White Cells count, dropping from 103,000 to 9,700 in 11 months on Imbruvica. My heart has begun Afib the past year, and the oncologist, ironically based on my research and prodding now thinks it is the Imbruvica. I went off Imbruvica for six months and my white cells crept up from 7,500 to 23,000, but the Afib disappeared or at least moderated. Does anyone have any information or experience you can share with me, please? If I do have to go off the Imbruvica, are there any alternatives you know that can work as well on White Cells? Any thoughts and facts would be greatly appreciated. Thank you.

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Irishgreek profile image
Irishgreek
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28 Replies

calquence . It's generic name is acalabrutinib

lankisterguy profile image
lankisterguyVolunteer

While Calquence / Acalabrutinib is designed to have less side effects, I am not certain that it has been proven to not have any - especially with AFIB.

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I believe that the top CLL experts would normally suggest Venetoclax/Venclexta to a patient with heart problems.

And since the ramp up from 20 mgs daily to 400 mgs daily is much easier for patients with low tumor burden ( minimal lymph nodes and low ALC) you may want to explore a fast change over vs. going back to Watch & Wait .

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Len

AussieNeil profile image
AussieNeilPartnerAdministrator

Further to Len's reply, Acalabrutinib/Calquence does seem to have a lower and somewhat different/overlapping side effect profile to Ibrutinib. Early indications are that the incidence is Afib is higher than the reference population, but lower than experienced with Ibrutinib. Headaches are commonly reported, which tend to ease over time. Arthralgia could be much less, but diarrhoea can also be a problem.

Here's the relevant pinned post about Hypertension & CV events on Ibrutinib

healthunlocked.com/cllsuppo...

Neil

Ellieoak profile image
Ellieoak

Talk to your Dr about Venteaclax.

kohsamui0 profile image
kohsamui0

i just stopped ibrutinib due to heart failure and afib for a long time, my doc but me on watch and wait untill progression , he want me on rituximab venetoclax combo at that time, i think that rituximab can be cardio toxic too, tell me you point of view regarding rituximab and cardio toxicity

AussieNeil profile image
AussieNeilPartnerAdministrator in reply tokohsamui0

You do need to monitor Rituximab infusions for indications of cardiotoxicity: cancertherapyadvisor.com/ho...

W00dfin profile image
W00dfin

After almost 2 1/2 years on Imbruvica I was diagnosed with afib along with out of control hypertension. A cardiologist started a second anti hypertension medication and 30 days on a heart monitor. Stress test and ultrasound also scheduled.

My oncologist d/c’ed Imbruvica one week ago as the culprit and scheduled monthly lab work to monitor lymphoma activity. I recently had a clear PET scan. He says the afib will go away after the Imbruvica leaves my system. So I am back on WW basically.

2016miniman profile image
2016miniman

Hi..I had an instance of Afib about 6 months ago while on Imbrutinib . My doctor stopped immediately. Then all the diseased cells attached my spleen and ruptured it😟 Had to stay in the hospital for two weeks to get my blood counts to go in in the right direction. Dr did a bmb and determined bone marrow makeup had not changed and wanted me to go on Venclexta. It worked wonderfully killing all my lymphocytes in 7 weeks! It also depressed my white bloods cells to nothing which gave mo functioning immune system. Dr lowered the dose in the hope wbc would come back..no change in either blood cell count last three weeks. Plans to suggest nulasta type injections in two weeks if no change (ugh) then another bmb if still no change.. no fun at all. Good luck in your treatment

virdieblue profile image
virdieblue in reply to2016miniman

For every action there"s a reaction. Darn it!

cll2013 profile image
cll2013

My CLL specialist at the University of Michigan cancer center told me in April 2019 that 16% of patients taking Ibrutinib now have afib related issues. I am one of them. I had small afib issues that grew to a big issue the day I was on an airplane over the Atlantic. I ended up in Iceland where the good people of the city took very good care of me. I was taken off Ibrutinib immediately, given Eliquis. Off both meds now and my blood count numbers are holding within a low range in every case.

in reply tocll2013

Glad to hear you are alright.

skunkbay53 profile image
skunkbay53

My husband also got AFIB from Imbruvica. His Hematologist has him stop it and several months later put him on Calquence. No problem so far

dvd1955 profile image
dvd1955

I had an AFib episode after 6 weeks on Imbruvica. Along with another side effect with bleeding. Onc. took me off Imbruvica right away. I started seeing a cardiologist about AFib prevention, and he put me on two meds, but after reading about them, I really don't want to take those either. So, it is interesting to me that others are seeing this with AFib and Imbruvica. Now I am wondering if I should try to convince the cardiologist to take me off the new meds, and how to go about it.

ETA: I've not had any heart issues prior to this, so we are pretty sure it is due to Imbruvica.

Gisygirl profile image
Gisygirl

I too have Afib ( the pulse is usually in the 50-80's..not very high but irregular. I was on the meds before being diagnosed with CLL. While the Meds ( Metatorpol, Digoxin, Eliquis) and the Imbruvica do not seem to jive, they are working on me, but I get awful bruising.

texigal profile image
texigal in reply toGisygirl

Hi Gisygirl..Imbruvica is well known to cause Afib. in susceptible folks. The existence of known afib pre-treatment is a generally a relative contraindication to the use of that drug. You should discuss coming off Imbruvica with your cll specialist and consider another option.

Hello, I've been on imbruvica going on my 4th week and I've had at least 1 AFIB event and almost daily rapid heart beats of 150 bpm. I am on the 420 mg dose per day. I had AFIB and rapid heart beat before imbruvica for several years now but I think it has been magnified due to my anemia (blood never returned to normal after chemo) and now low platelets 87.

I think that the cancer, plus the meds, plus the anemia, and other medical factors are stressing my body causing the rapid heartbeats plus the verapamil i take magnifies what imbruvica does! I am going to ask my dr to reduce the dose or go onto something else which does not have this side effect.

on the webmd site they have reviews on imbruvica and at least 5 said the patient had dropped dead! this is in the small print they give you when you get the drug. i don't think my doctor took this into account when putting me on imbruvica - i think he is the kind that likes to "blast" the cancer out of you and i think that approach is too much for my body. I do not have a strong constitution to begin with plus i am weighed down with these other conditions: CF/Fibro, high blood pressure, AFIB. I don't think he took that into proper account. So I am also going to look for a new doc after the new year.

Irishgreek profile image
Irishgreek in reply to

If possible, try to find a CLL specialist, the Oncology and Hematology generalists I am using have been okay, but quite limited in their knowledge of all the drugs and the many different modalities for treatment. I will keep you in my thoughts and prayers azga!

in reply toIrishgreek

Thank you. and me also with you.

texigal profile image
texigal

Hi azgal1953... I hope you are scheduled to see your oncologist for discussion of your increased Afib and other side effects. He/she will surely want to know you are not doing well on your therapy.

Irishgreek profile image
Irishgreek in reply totexigal

Thank you, I did so, but he seems more confused than ever. I am getting a second opinion next week.

in reply totexigal

Hey Texigal .. I am going to fire him. I got a referral from my excellent cardiologist who gave me 2 other doctors at that clinic who are the type of doctor I am looking for. Thank you.

texigal profile image
texigal

Great idea! I hope you have access to a CLL specialist for consult.

Irishgreek profile image
Irishgreek in reply totexigal

Thank you. I am seeing a CLL specialist next week, a woman who has been working and studying and treating CLL for 33 years. I am quite sure that every other day will work or a lower dose a day (like 140 MG versus 420 MG) will work. I will let her tell me and then let you know too. Take care. Michael

in reply toIrishgreek

You know I was thinking this exact thing about myself. I stopped taking imbruvica last weekend for 2 days and immediately felt better and over 2 days my rapid heart beats diminished. I wanted to give my body time to deal with the flu bug as well. On it again as of Monday but will probably take every other day until my consult next tues.

texigal profile image
texigal

Great! Will be interested in hearing her recommendations. Best wishes Michael.

Betty

Nracll1944 profile image
Nracll1944

I started imbruvica about 4 years ago and quickly developed Afib. The cardiologist put me on metoprolol and Xarelto and that controlled the Afib, now I have been taken off imbruvica. I wonder if I can stop heart med and not get Afib returning

DunkinDarla profile image
DunkinDarla

I was put on Imbrivica and right after I got AFib. The cardiologist put me on Eliquis and one other drug. I still get fluttering. I’m trying to get my doctor to change Imbrivica so my heart goes back to normal. My family doctor says my CLL won’t be what kills me but I think the AFib will. The company that makes Imbrivica says the percentage of people who get AFib from their drug is much higher. I say take it off the market.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toDunkinDarla

With fourteen competitors to Imbruvica in the CLL market, healthunlocked.com/cllsuppo... there are approved alternatives, depending on where you live.

In the USA, acalabrutinib/Calquence is FDA approved for CLL treatment and zanubrutinib/Brukinsa can be prescribed off label. The risk of developing AFib is roughly a third of that experienced with ibrutinib. Some members have reported their AFib clearing after switching.

Neil

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