You are here

Nilotinib and heart palpitations

Categories:

Hi all,

I'm on nilotinib since my DX in May. I have no arrhythmia (that I know of), I have normal blood pressure, and in general I feel fine when walking some distance or exercising (apart from some expected fatigue or shortness of breath that immediately goes away if I rest for a while).

However, I've been experiencing heart palpitations, in the sense that if feels like my heart beats are loud. I usually feel that after lunch, or when I go to bed. My next doctor's appointment is Nov. 20, so I'm trying not to freak out until then, since i'm doing pretty fine overall (0.32% bcr/abl within first trimester).

Is there any symptom that I should be particularly monitoring, that should alarm me? Does anyone else have the same experience?

Thanks in advance for the comfort words :P

Regards,

Koralia

Koralia:

I started experiencing palpitations a month or so after I first started nilotinib 3 years ago at 300 mg 2x/day.  They were pretty bad, some days lasting all day, other days only occasionally.  Often they were worse after meals but not always.  I went to see a cardiologist and had a full workup - ekg,  echocardiogram, heart holter, nuclear stress test.  Dx - benign PVC's and PAC's (ectopic heartbeats).  While relieved there was nothing structurally wrong with my heart, these were still uncomfortable and concerning to me.  Due to rapid and deep response as well as other side effects, I reduced my dose three times over 6 month period to 450, then 300 and finally 150 mg 1x/day.  After these reductions, the palpitations pretty much went away for about a year.  Then about 9 month ago, they started up again, not as bad, but still uncomfortable.  I tried magnesium supplementation, metroprolol (beta blocker) and verapamil (calcium channel blocker) and none of these worked.  I considered TFR, but with only 3 years of treatment under my belt, would prefer to wait another 2 -3 years before trying.  About a month ago, my GP tried another beta blocker called propranolol HCL 80 mg CR and viola, that has worked.  I still have an occasional palpitation, but frequency is way down.

You should have a cardio workup to rule out other causes, but I'd bet it's the TKI doing this to you.  Good luck - hope you find some relief from this.

 

Hi cmljax,

Thanks for the reply, and for sharing your experience.

I think my discomfort is changing everyday so it's not really persistent, and I think it is probably combined with some gastroesophageal reflux. Today, for example, I don't feel palpitations, but heartburn.

I plan to have a cardio workup anyway just in case, but I think I am a newbie in handling cml, and I probably freak out easily :P

Thanks for the support :)

Koralia

Hi Koralia,

I have been on Nilotinib for 19 months after 3 months on treatment and I had palpitations that lasted for around another 3 months. The diagnosis affected me really hard mentally and emotionally I was equally as scared of the medication and more in some ways than having CML itself. I put those palpations down to stress and anxiety (which I suffer from) not had any for over a year. Try not to freak out and let things bed in. I hate any visit to the docs but if it concerns you enough you should get checked out.

This journey is an emotional and mental one as much if not more than it is a physical one. In fact I just had my 18month PCR today which puts me nigh on MMR @0.118%. Just a fraction to go. There are some wonderfully supportive people on here so I am sure they be able to recommend as I have. But in my case I truly believe this was an emotional response and is likely the same for you.

Wishing you all the best

Alex

 

 

Could be all caused by stress/anxiety, but I am pretty sure that my recurrence was not.  I think for me the palpitations are caused by the TKI and perhaps exacerbated stress.

Hi Alex, cmljax,

Thank you both for your answers. A week later, all I can say is that, whatever it was, it was cyclic, and went away after a week. 

It could be stress, or it could be some minor, non-persistent side effect. Who knows...

On with my second BCR/ABL test (6 months), coming Tuesday. Let's see how that goes :) Fingers crossed :)

Regards,

Koralia

I've had this from time to time as well. Recently, the 3-point ECG on my smart watch was indicating unusual results and I wasn't feeling 100% at the time. Like you, it cleared up on its own and the 12-point ECG that my doctor ordered was normal and showed a sinus rhythm. Can't really say what the cause of it was - I hadn't changed anything in the run up to it.

David.