ANYBODY ELSE IN AFIB?: I have been on... - CLL Support Assoc...

CLL Support Association
13,253 members20,801 posts

ANYBODY ELSE IN AFIB?

I have been on Imbruvica for almost two years and it has been wonderful. It has given me a completely normal life and I’m 7 years in. If a doctor looked at my blood work he/she wouldn’t know I had CLL. That’s how normal my numbers are. I recently got what I thought was a UTI but it turned out to be an E. Coli infection and I have felt bad ever since. Turns out I am in AFIB and didn’t know it. Apparently, AFIB is not uncommon for those of us on Imbruvica. Anybody else going through this too? Not feeling all that great because of it but grateful to be on Imbruvica and I consider it to be the miracle drug.

38 Replies
oldestnewest

Sorry to hear about the Afib and e coli. How did your doctor spot the afib if you weren't aware of it? I have been on Imbruvica for 2 years, and am not aware of Afib... but am not sure I would know how to recognize it. I am occasionally aware of my heart rate becoming very irregular, which makes me feel weird and weak. But it never lasts long. And doesn't happen often enough for a 24-hour holter monitor to catch anything. I've mentioned it to various doctors more than once. But since it never manifests in front of a doctor, hard for anyone to know what's going on.

good luck to you!

kim

1 like
Reply

didn´t your Dr sent you for control to a Cardiologist ? Mine did now that i am almost a year on Ibriutinib , my BP is getting higher... she ordered a ECG & Echocardiogram

1 like
Reply

no, nothing like that for me. i think that would only be relevant if a person's heart is routinely off. it's of no use in a situation where a rhythm irregularity only manifests infrequently. any ecg given to me would most likely read normal - always had in past.

Reply

I am like you Kim, I have irregular heartbeats a lot and they have increased since being on the Ibrutinib, but they don’t act up when the doctors are around. I did wear a holter monitor for 24 hours, but of course it didn’t happen when I was wearing it! It did note that I have some Premature Ventricular Contractions (PVC’s), but they are not serious at this point and can be caused by chemical imbalance or anxiety.

BeckyL

2 likes
Reply

Of course, I’m in the care of a cardiologist and am being medicated and monitored closely. I was very tired and had an allergic reaction to a shingles shot and I went to the ER which is how we found my AFIB.

1 like
Reply

Thanks. I’m doing ok. I’m 7 years into this and it really hasn’t been that hard other than a couple of hospital stays and some chemo infusions and some spinal taps. Just happy to be alive and living a normal life. Most people who know me don’t even know I have Leukemia.

4 likes
Reply

That's great to hear! :)

Reply

You can wear a 2-week patch monitor and even a 30-day one. You may well be in afib, possibly just from time to time. My experience after being on ibrutinib for 3 years and going into afib at 39,000 feet over the Atlantic is that the previously "occasional" afib just kept getting worse until this big event while flying to Brussels. So, bottom line, try to find out the frequency via a monitor. I had to go on Eliquis 4 months and stop the ibrutinib. Now I'm off the blood thinner but also off ibrutinib and on W&W again.

3 likes
Reply

thanks! i didn't know there was a 2-week and 30-day monitor. do you have electrodes/wires taped to your skin the whole time?

Reply

The patch is about 2 inches long and 1 inch wide. Looks like a digital bandage. You can even shower when wearing it. No wires.

1 like
Reply

that's great! I'm going to ask about this!

Reply

Do you keep the receiver for the information in your pocket or bedside? And is it transmitted by bluetooth? Or is it all right in the band-aid?

Reply

I wore a zio patch recently. A nurse stuck it on, but it started to come off after my first real shower. We taped it back on. After nearly two weeks I mailed it to the Rhythm Company in a mailer that came with it. After another two weeks they mailed it to my doctor. I did not have afib but an incident of tachycardia. This prompted wearing the patch.

Mike

1 like
Reply

interesting. i had not been aware of this patch technology for heart monitoring.

Reply

There is nothing else you have except the patch taped to your chest. While you can shower while wearing it, just turn the shoulder away from the water. It can get moisture but not water blasting directly at it. The patch is sent into the company who reads it and reports to the doctor. It took about a week for that to happen, though they say to allow 2 weeks.

1 like
Reply

I developed AFib after 5 months on ibrutinib and I definitely knew it. I went to the emergency room with palpitations and was rushed into the cardiac critical care unit. Since the meds they use to treat AFib are contraindicated with ibrutinib, they had to wait 4 days for the ibrutinib to clear my system - meanwhile my heart rate was 190 and I went "code blue" 3 times. Finally, they gave me a push of Amiodarone which brought my heart rate from 190 to 40 then stablized me. I then slowly ramped back up to full dose of ibrutinib over a week along with an ongoing prescription of Metoprolole to control the AFib. Ten months later I'm doing fine. But my hem-onc and cardiologist coordinate very closely.

1 like
Reply

Scary stuff Tim. I didn’t get anywhere like that in the ER. My heart rate briefly got up to 150 but they were able to control it quickly and it has stayed under 100 ever since and usually between 70 and 85. My Oncologist and Cardiologist will be watching me closely and I am taking Metoprolole to control the AFIB. I’m still very tired and can’t walk long distances. Will it eventually get better or are you constantly tired too?

Reply

I am still very tired too I think it’s the Ib. I have been on it for six months but three months ago I had them put me down to two pills a day and when I go back I’m going to ask him to put it down to one. My labs all look good but I feel 0% better so I don’t understand that. I previously had a ventricular arrhythmia and had a cardiac ablation in 2017. I still notice when I get very rapid heartbeat but not like it used to be, nonstop, but I also don’t know how you tell afib from the arrhythmia I already have. My neighbor also has CLL and he was like me just wanting to sleep all the time they have him down to one pill now and he’s doing better

Reply

I started on 240mg of ib then it was cut to 140mg 1 a day feels better but still the side effects hair loss bruising and now u understand those heart flutters a little better thank you all

Reply

I have also lost about half my hair. It is so thin it feels and looks weird. Just in the last month it started.

1 like
Reply

My dad has CLL and is on Imbruvica but his afib actually started shortly before he started taking Imbruvica I’d say about a year ago or so. I think he’s decided it doesn’t hurt or bother him enough so he’s just living with afib right now as he doesn’t want to stop taking Imbruvica and also doesn’t want to do anything invasive about it.

Reply

Your Dad sounds like me. I have been on Imbruvica for 5-6 years now. I have afib but my pulse is under control- rarely over 90 bpm so with medication for that, I am living with it without problems. The imbruvica is working so the afib is a side affect I am dealing with and seeing a cardiologist every 6 months.

1 like
Reply

I went into afib after being on ibrutinib for about 6 months. I was hospitalized and put on tikosyn(dofetilide) to control heart rhythm and pradaxa a blood thinner to avoid the possibility of developing a clot which can happen with afib. I opted for a heart ablasion this past March so that I could stop the medications. I then wore a monitor(small) for a month while all meds were stopped. Thus far I have had no episodes of afib and am no longer taking any heart medication. The procedure wasn't bad. I know that ablasions are not always successful and sometimes have to be repeated but thus far I'm doing fine.

1 like
Reply

I too have exercise induced afib. very great concern. Selected Metroprolol and hydrochlorthiazide for blood pressure control, hoping to get two for one benefit.

Also take supplemental potassium and magnesium, as these influence heart rhythms. And try for low sodium diet.

I am a physician and am aware of risks. Would strongly recommend doing these only under medical supervision.

Reply

My husband was on Imbruvica for 8 months then got bad AFIB. Spent the weekend in the hospital. Was put on a beta blocker and was taken off Imbruvica. He just started Acalbrutinib Calaquance. New and similar to Imbruvica but with less side effects and less chances of getting one. So far so good.

1 like
Reply

RK69: I was on Imbruvica for six months when my GP noticed AFIB during a routine check. Sent to a cardiologist had tests and was confirmed. I had no symptoms. Was prescribed Eliquis. Get checked by cardiologist every six months. After 20 months on Imbruvica with severe leg and joint pain, I changed from my Hem/oncologist to a CLL Specialist. He changed me to Acalabrutinib. I have been on Acalabrutinib since May 1 this year. I am still on Eliquis. I still have no symptoms of AFIB. I am doing well with less side effects on Acalabrutinib.

Bill1288

2 likes
Reply

Has your leg and joint pain subsided?

Reply

It is about 80% better. Just have some minor issues and that is it.

Bill

Reply

Hi I am only a watch and wait so probably not relevant however I had atrial fibrillation that is how my CLL was picked up as I have many blood test I didn’t tolerate heart meds but I had an ablation done 1st first time lasted a year the second op Very successful and in my 7th years and no palpitations and feeling great couldn’t recommend it highly enough has change my life with regard to my heart

Reply

FYI, there is a small device called Kardia sold by AliveCor for $99 on Amazon which can detect Afib. It gives you the option to email your recording to anyone including your doctor. It’s FDA approved and has been through clinical trials.

I’m quite happy with mine.

Bill

1 like
Reply

Yes, my husband is in Afib, the heart doctor wants him to do the Watchmen device surgery! Did the research , does not really lower the risk of having a stroke! So will stay status quo for now, numbers are good!

Reply

I've told my story before, but in late 2017, after 15 months on Imbruvica, I developed Afib. A few months later, it had damaged my mitral valve. I had it repaired by TMVR (Trans-catheter Mitral Valve Repair), and switched to Calquence (Acalabrutinib).

Tikosyn now controls my heart rate, and Calquence is controlling the CLL, although in a much slower and gentler way than Imbruvica. Imbruvica was very effective against my CLL, but I was one of the 9-16% who suffered Afib (and its consequences).

I'm no doc, but you're right to get a cardiologist involved ASAP. I was told that if I had caught it earlier, the Afib might have been controlled before the mitral valve damage, so I'd suggest that anyone on Imbruvica (Calquence, too, but it has a lower % of Afib) check out the "Kardia" that bhayes mentioned - unless, of course, if you can detect Afib in a simpler manner.

Gary

Reply

Sounds like my situation. I had a fever in March was hospitalized and they couldn’t find out why I had fevers. My heart starting doing some crazy stuff. Told me I was in AFib put me on Eliquis . Stopped imbruvica after 15 mos. , still not have resumed. August 4th my skin turned yellow so I went to the Er. I was put on prednisone because hemoglobin went down to 8.4. Hemoglobin has gone up to 11.5 go for another blood count on Tuesday. All numbers are good. I have dr appointment September 17th and will discuss what my treatment will be. My dr is worried about the Afib coming back. Doesn’t want me on eliquis and imbruvica together. Cardiologist had me on a monitor for 1 month and no problems so far. He is checking with other drs and reviewing my case. I felt fantastic on the imbruvica so hoping for the best. This cll is unpredictable and we just have to ride the storm. We are all in this together. Hoping good health and best of luck with meds God Bless all who are in this ride 😘🙏🏻❤️

Reply

Thanks. Best to you too.

1 like
Reply

Sorry to hear that!

I'm about to start a clinical trial that involves ibrutinib and my doctor did a dopler echo and EKG before starting to look for structural defects in my heart prior to treatment. She is a CLL researcher and believes that the chances are higher for getting afib in those cases, and has published a recent research paper on the topic recommending those tests prior to treatment.

"Risk factors for the development of atrial fibrillation on ibrutinib treatment"

ncbi.nlm.nih.gov/pubmed/307...

I realize this won't help you but others not yet treated who read this thread might want to scan the synopsis of this article and discuss the testing with their doctors prior to treatment. Referring to a study, it reads

"The incidence of AF was 11.9% after a median 154-day ibrutinib exposure. Only heart failure (hazard ratio, 95% confidence interval; 14.1, 5.3-37.2) and left atrial abnormality on electrocardiogram (5.4, 1.9-15.4) were independently significant in paired Cox regression. Eighty-seven percent of patients with HF satisfied Framingham clinical criteria. As structural heart disease is a strong risk factor for incident AF, we emphasize the importance of baseline electrocardiogram, recommend baseline clinical screening for HF and, in specific instances, a baseline echocardiogram."

I am concerned about afib as well but looking forward to treatment.

Dave

1 like
Reply

Please define or link to definitions of AFIB and UTI.

Reply

AFIB is Atrial fibrillation which is an irregular heart rhythm characterized by rapid or abnormal beats. UTI is a urinary tract infection.

1 like
Reply

I am on ibrutinib 4+ years. Afib started when a PICC (peripherally inserted central catheter) was used to give me vancomycin for an infection. Stopped when the PICC came out, so my cardio electro physiollogist said it probably was that. After 2 more years on IB it came back. Diagnosed this time as afib. Each time it would stop on its own in less than a day. My beta blocker was doubled (carvedilol) to control the rate, which is as effective and usually less dangerous than the meds like dronedarone that control the rhythm. Also onto Eliquis 5mg. x 2 a day. No one seemed alarmed. People live normal lives with even permanent afib; one of my pingpong opponents has it. He's 90.

But it and too many PAC's (premature atrial contractions) were driving me crazy. My hemonc suggested switching to venetoclax, but IB was working so well, I finally opted for a cryoablation. No more afib. Far far fewer PAC's. Eliquis reduced to 2.5 x 2 a day (I am 79 and my creatinine is 1.8).

Each of us is different. The only real risk (for most people) from afib is clots and strokes. So you go on a blood thinner, usually Eliquis. But for some like me the symptoms were truly bothersome. Hence the ablation.

Good luck.

Reply

You may also like...