Heart Problems because of imbruvica. - CLL Support

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Heart Problems because of imbruvica.

tlcladygiraffe profile image
14 Replies

I was wondering if any patients had to go off the imbruvica because it was creating heart problems like high blood pressure and arrythmia and if you did how are you doing since going off it.

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tlcladygiraffe profile image
tlcladygiraffe
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14 Replies
cnickeas profile image
cnickeas

Didn’t have a fib, but tachycardia. Taking metropolol. Working well. Still on imbruvica

cllady01 profile image
cllady01Former Volunteer

Hi, you can read several former posts on this subject in the column , "Related Posts", while you are waiting for answers to your post. And, yes, there have been heart-related issues that have resulted in pts. going off ibr.

I have not had the experience of treatment, so can't answer directly.

starsafta profile image
starsafta

Have been on Lisinopril for raised blood pressure after about 15 months on Ibrutinib. Started on 5mg/day, now on 7.5mg. Doing fine. Since I feel so well on Ibrutinib, I want to keep taking it as long as it is working.

crystalsky profile image
crystalsky

My husband unfortunately had a mild heart attack after being on Ibrutinib almost six months. He did have prior heart issues, and we had concerns for him to go on it. He has been off of Ibrutinib since his heart attack in March, and doing well thus far without treatment.

Due to my husband's heart issues his cardiologist said no to going back on Ibrutinib if he needs treatment down the road, and my husband also is not willing to resume the drug if needed.

Everyone must decide what is best for them, but if he had stayed on the drug and he ended up having high blood pressure, as up to 80% of patients eventually due (according to the hospital pharmacist), my husband was prepared to stop the drug. He's not willing to risk further damage to his heart.

Jm954 profile image
Jm954Administrator

Crystalsky, I’m surprised by the 80% figure you quote for hypertension. Can I ask where that came from?

crystalsky profile image
crystalsky in reply to Jm954

The hospital pharmacist who would come into the room during my husband's appointments, to dispense his drug. He also said the longer you are on the drug, the more likely you will develop high blood pressure. But, no worries, we have a drug for that too!

Jm954 profile image
Jm954Administrator in reply to crystalsky

Ok, thanks. I haven’t seen anything as high as that quoted. Commonly quoted is approx 25% of patients with numbers increasing to this level the longer the patients are on Ibrutinib.

crystalsky profile image
crystalsky in reply to Jm954

Perhaps, he was quoting direct rates for the patients with CLL being treated at the cancer center my husband goes to. I'm not sure. Still, it's high over time.

NooNoo14 profile image
NooNoo14

I had pre-existing Atrial Fibrillation for 3 years before starting on the Flair Trial (lone Ibrutinib) in March this year. Since being on it the episodes of AF have definitely increased to the point where I think I will soon be in it permanently (which my heart doc thinks will be preferable as I won't be so aware of them?).There was a query about me having to stop the Ibrutinib and the Trial because I take anticoagulants but have just been told I can stay on it which I am keen to do because it is doing it's job and my numbers are all going in the right direction.

I understand that the Trial rules have now changed so if you are on anticoagulants for more than 6 months you will not be considered so I consider myself lucky.

I wold say that apart from having AF, my heart is otherwise healthy.

Netty

richutchens profile image
richutchens

I visited Mayo last Friday. I am done with treatment at this time. All blood levels are normal except MRD which is 4.11.

Due to AFIB (which I currently have no symptoms). I am off any drugs until things get elevated from where they are. I go to three month visits. Next will be in November.

glkmel profile image
glkmel

Initially diagnosed in 2015 with Bcell PLL. Ibrutinib caused AFib n high blood pressure. On Eloquist n Metoprolol. Numbers are holding steady. Mainly the fatigue in the afternoons but still working half days. Am 77 and I’m fine till I’m not. Stay positive! It is what it is.

aloneagain profile image
aloneagain

I had to stop Umbrivica just short of a week of taking it. Aside from boils on bottom and sores all over roof if mouth, I started experiencing a very obvious irregular heartrate and dtopped the Umbrivica and called doctor. So I can not take it. I was so darned miserable not being able to sit because of the boils around my rectum and then just a sip of water caused bad pain in my mouth do I had it coming and going! Wasn't sure which end to pamper first! It took my third round of Rituxan infusion to have lungs damaged. I always had isdyes with congestion after every treatment but no-one addressed it. Then I rnded up in ER due to difficulty taking in air. Oncologist said was common with Rituxan. Unfortunately, the delay in acknowledging the constant congestion allowed the situation to get worse. I may not have gotten so bad had someone, mainly nursing staff addressed the issue. Especially when I called and left a detailed message that I was having breathing issues. Never got a reply from a nurse. Either person who took message did not pass on this critical info to a nurse, or the nurse di

Oleboyredw-uk profile image
Oleboyredw-uk

I was on Ibrutinib for about 15 months. I already had hypertension so the team had been watching my blood pressure like hawks. For me there was no apparent rise in bp as a result of going onto Ibrutinib.

rob

Joyefulone profile image
Joyefulone

I took Imbruvica for about a year and had pneumonia, was in hospital about a week with them trying to get my blood pressure down. I have been on metropolol since then. It is still high. I had never had any problems with my heart or blood pressure before I started Imbruvica. I have been off it for about 7 months and still in remission.

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