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nilotinib

I have just started taking nilotinib on Tuesday while away at work. I have just returned home for the weekend and my wife has just read the package information leaflet and is really worried about the side effects of this tablet that affect the heart. Can anyone give us some information?

I was on 600mg glivec daily (since being diagnosed in 2003) and results from the blood tests being 0.002 last time. We decided to change tablets because of cramps.
Have I DONE THE RIGHT THING?
I am very concerned as I have had two Uncles who have dropped down dead with sudden heart attacks due to undiagnosed heart problems.
Consultant did put me for an ecg.

Robert

Hi Robert I have been on Nilotinib now for more than 3 years. I was first diagnosed in 2001, and this is my 3rd TKI

They all have their problems, but if you are at a centre of excellence, and are well monitored things should be fine.

Have you told your consultant about the family history?

Mine is fully informed of mine - also a difficult one with diabetes as well ! - and monitors me like a hawk! Still better safe than sorry.

Hope you get on OK otherwise with the drug, I fine it the best yet.
ATB
Pennie.

Hi Robert, I entirely understand your concerns, however whilst nilotinib (and ponatinib) have some effects on cardiovascular system- as Pennie says, all TKIs have toxicity problems, it is just that there is more long term data on imatinib, for obvious reasons.

There are certainly some clinical cardiac effects that both nilotinib and ponatinib have shown a small percentage of patients. With ponatinib- which is the newest TKI and still in trial, it remains to be seen how this pans out in the wider population. With nilotinib there is a lot more data. You could take a look at the following paper published in 2012. From the articles conclusion it seems that although some effects were documented it is not not common. I would agree with Pennie, you should ask you doctor to take into account your family history, and make sure you are monitored carefully. I am sure nilotinib is a very good drug for the majority- maybe changes to diet and lifestyle forced by its administration schedule i.e. fasting etc. might have a good effect in some people. I have read quite a few accounts of weight loss etc. that was a welcome side effect.

Nevertheless, talk to you doctor about your worries.

Hope this is helpful.
Sandy

Clinical cardiac safety profile of nilotinib
Theo D. Kim1, Philipp le Coutre1⇓, Michaela Schwarz1, Peggy Grille1, Michal Levitin1, Suzanne Fateh-Moghadam2, Francis J. Giles3, Bernd Dörken1, Wilhelm Haverkamp2 and Clemens Köhncke2

Conclusions: Whereas new electrocardiographic abnormalities were recorded in 20% of all patients, and some of them developed severe or even life-threatening coronary artery disease, QT prolongation, changes in left ventricular ejection fraction, and clinical cardiac adverse events were uncommon in patients treated with nilotinib.

http://www.haematologica.org/content/97/6/883.full