Alectinib and low heart rate

[Fattyboy]

My wife has been on alectinib for approx 8 months now with excellent results so far. She has recently had to be taken off the drug for a 1 or 2 week period on 3 occasions due to her heart rate being in the low 50’s. Has anyone else had this issue and if so what was the outcome? We are wondering if this is going to a continual on - off cycle going forward due to the effect on her heart rate that alectinib is having? I look forward to hearing of anyone’s experiences please. Thank you.

[Mikest1]

I am on Brigatinib another ALK inhibitor. I have heard of some taking a reduced dose of alectinib due to side effects. Have you joined the ALK POSITIVE UK facebook group as there are over 200 members and most are on alectinib. I recommend joining as well as the world wide group. You get a lot more specific information on treatments. Wishing your wife all the best.

[Bow-19]

Hi I am ALK Positive too. I haven’t been on alectinib though. Like Mike says there is a great U.K. group for ALK see alkpositive.org.uk and also a worldwide group see alkpositive.org both are worth joining. The U.K. one shows what’s happening here and the Worldwide one has Research and clinical Trials and provides a worldwide picture. These groups are where I get the most of my support from in relation to ALK and what’s going on. Depending on where you live to we meet up a couple of times a year if you are interested. I will have been diagnosed 6 years in November and initially for the first couple of years the worldwide group wasn’t available. The U.K. group followed on from that. Hope that you and your wife decide to join x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

A slow heart rate is a known side effect of Alectinib and the management of this is temporary discontinuation of the medication until the heart rate comes back up. It can be difficult to know how often this may happen and like any side effects, requires monitoring.

Both Mikest1 and Bow-19 have made great recommendations to the forums for ALK Positive where you may find more people with the same experience as your wife, that they can share with you.

If you wish to discuss anything you can call us on our Freephone nurse led helpline number on 0800 358 7200.

All the best

The Roy Castle Support Team

[Fattyboy in reply to RoyCastleHelpline]

Thank you for your reply, we have joined the ALK positive uk group.

John