Registered Charity 1114037

Nilotinib and cardiovascular

I see my consultant last Monday, he said that there appears to be new information regarding cardiovascular events with regards to Nilotinib. I have been for a chlolestral check and I'm awaiting results. Has anybody else been told this

Nilotinib and cardiovascular risk

Hi Jacqui, I hope you are well. I was told the same thing last week by probably the same consultant as you. I will get mine done in 3 months when I see him again. I am not sure what he meant by the new information, as I have known since starting the drug it carried heart risks (mentioned in the info leaflet) There must be additional reports I would imagine. I am pleased he is keeping a closer eye on me though and it is reassuring that we are getting good care.

Risk Profile

Hi Jacqui,

It has been discussed briefly before:

http://www.cmlsupport.org.uk/node/7852

Although it is a concern, i take the view that without Tasigna I'd be in a pretty awful place. There are obvious side effects to 1st and 2nd gen TKIs and perhaps side effects none of us know about yet.

I look at my overall risk profile, watch what i eat, try and stay active (easier said than done at times) and limit alcohol intake (actually zero through choice). I also had my cholesterol checked and it was fine. I really hope i won't be on Tasigna for life and that the results of the DESTINY trial show the ability to reduce dosage to the minimum required to maintain a response.

I try not to worry about it too much and keep my risk profile as low as possible.

Chris