Heart Issues and Venclexta?: Has anyone had... - CLL Support

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Heart Issues and Venclexta?

KKwtx profile image
10 Replies

Has anyone had problems with their heart racing on Venclexta? My husband was diagnosed with CLL 17p deletion 53 mutation In 2018. Over the past 5, almost 6 years, he’s been treated with Ibrutinib, Venclexta, and Acalabrutinib. He’s had to discontinue all 3 because he couldn’t tolerate them for long. his doctor started him on Obinituzimab infusions in August and added Venclexta this past Tuesday at 20mg to ramp up to 100mg over the next 2 weeks. His heart started racing today. Anyone else experience this?

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KKwtx
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10 Replies
Greenbunnies profile image
Greenbunnies

I have had a bit of this and I'm on V and O. For me I think it was linked to anaemia (which resolved quite quickly) and then more recently B12 deficiency.

KKwtx profile image
KKwtx in reply toGreenbunnies

Thank you! We’ll ask about both next week!

Cllsller profile image
Cllsller

No, but I had horrible headaches when I started taking venclexta. I too was on Ibrutinib and Acalabrutinib first. I think you should call his doctor immediately. Wishing you both good luck.

KKwtx profile image
KKwtx in reply toCllsller

Thank you! You as well!

Newdawn profile image
NewdawnAdministrator

Yes I did. A couple of days after stopping Ibrutinib but remaining on Venetoclax, I had a serious episode of tachycardia for which I was hospitalised. It wasn’t a haematology unit and they couldn’t even spell Venetoclax let alone understand its clinical mechanism.

Long story short, I had a battery of cardiac tests and thankfully no AF or abnormality was detected. I remain on beta blockers to keep it from surging as I was getting episodes of a heart rate around 169 without explanation.

Best wishes,

Newdawn

KKwtx profile image
KKwtx in reply toNewdawn

Thanks so much. We’ve had the same experience here. No one has a clue what targeted therapy is when you go to the hospital or stand alone ER.

SeymourB profile image
SeymourB in reply toKKwtx

KKwtx -

For us, a visit to the hospital requires that the ER/ED contact out hemo/onco as soon as possible. What I fear the most is an ER/ED visit on a weekend or holiday. Please address that with your hemo/onco, but expect an answer like, "Well, the answering service will try to contact the on-call hemo/onco, and they likely won't be familiar with your case."

Sigh. Taking my anxiety pill now.

=seymour=

KKwtx profile image
KKwtx in reply toSeymourB

Right there with you😞

SeymourB profile image
SeymourB

I'm on Venetoclax and Pirtobrutinib. I get somewhat tachy (100-120bpm) when I have a fever. Check his temperature.

The FDA insert, which is based on clinical trial data, doesn't mention tachycardia as a typical or even minor adverse effect.

accessdata.fda.gov/drugsatf...

HIGHLIGHTS OF PRESCRIBING INFORMATION - These highlights do not include all the information needed to use VENCLEXTA safely and effectively.

But it could be irregular heartbeat, which can feel like racing. The FDA insert definitely mentions that as a possibility of TLS (Tumor Lysis Syndrome) when first starting Venetoclax, especially if ALC is high, very enlarged lymph nodes or spleen, or high infiltration or cellularity in bone marrow. Usually, they do blood tests at each ramp up to check for high uric acid, high phosphorus, high potassium, and low calcium. Is he getting those tests?

my.clevelandclinic.org/heal...

Tumor Lysis Syndrome

Note that low calcium on those tests is associated with irregular rhythm. Don't just boost calcium without checking the test, though - high calcium can cause other problems.

=seymour=

KKwtx profile image
KKwtx in reply toSeymourB

Yes, he is being monitored closely for TLS and so far, all those counts look good. We’ll go back Tuesday for more testing and ramp up to 50 mg. Have any of you had bad fatigue with this too? Not sure if it’s the Venclexta or O infusions causing that, but hoping it subsides with time. Thank you for replying!

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