Heart problems: Have any patients out there on... - CLL Support

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Heart problems

tlcladygiraffe profile image
8 Replies

Have any patients out there on Imbruvica gone off the meds because it has caused heart problems and if you did how is your heath?

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tlcladygiraffe profile image
tlcladygiraffe
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8 Replies
PlanetaryKim profile image
PlanetaryKim

I haven't had heart problems with Imburvica (ibrutinib). But I have had to briefly go off it twice for other reasons - once for 10 days, and once for 14 days. Each time my CLL reasserted itself quite quickly, within first few days of stoppage, even though my CLL becomes invisible in terms of symptoms when I am on Imbruvica. So in my case, I really can't go off it without becoming quite sick again from CLL. Others may be different.

kim

Soundsinamotion profile image
Soundsinamotion

My father has atrial fibrillation, I believe it started shortly before even starting ibrutinib but decided to stay on ibrutinib because his symptoms arent bothering him too much, I know he takes a small dosage of a blood thinner too for the heart.

Philcll profile image
Philcll in reply to Soundsinamotion

I am dealing with the same problem and I have been Zapped 2 times and for 2 days I was out of A-Fib I am going back

To be Zapped again , people live ok with A-Fib , I will keep taking my Inbruvica

Soundsinamotion profile image
Soundsinamotion in reply to Philcll

Yeah my dad doesn’t want to get zapped or have the invasive surgery because there are no guarantees it will work. His doctor said most people who get zapped it doesn’t last. There are people who live long lives with afib and the stroke theory doesn’t make sense.

Philcll profile image
Philcll in reply to Soundsinamotion

Thank , I am giving it one more shot

Soundsinamotion profile image
Soundsinamotion in reply to Philcll

Keep us updated! And best of luck to you!

Philcll profile image
Philcll in reply to Soundsinamotion

I will

Thank you

jaypax profile image
jaypax

Hi. Oh yes! I was on Ibrutinib for just 2 months during which time I was hospitalised twice. I normally have a slow heart rate but after a week or so of Ibrutinib it was down to below 40 with a couple of missing beats. My blood pressure was chaotic, The lowest was 75/40 and an hour later 175/80 for no apparent reason. Needless to say it was an alarming time and quite frightening. I have now been off the meds for 6 weeks and feel much better in myself. However the Ibrutinib has done it's job to a degree in as much as my lymphocyte count has gone down to below the pretreatment level and is, to date, showing no signs of increasing as it was before. Due for a check in a couple of weeks, hopefully all will be well. Best wishes to all. Jeff

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