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stroke and nilotinib

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has anyone had a TIA whilst taking nilotinib?

If you are at risk of a stroke you should not be taking nilotinib.

Sandy

Spoke to my stroke consultant yesterday he said i had 2 strokes because of nilotinib its Caused narrowing of the blood vessels to my brain
There is literature on the internet dating back to 2013 about it.
My oncologist is calling me tomorrow
Had cml since 2003.

Follow up
I received a phone call to see an oncologist asap.
He has admitted that nilotinib caused both strokes.
I have been taken off it right away.
Because I've been in remission about 4 years they are going to monitor me every 4 weeks.
There has been alot negligence
He is going to get in touch with everyone's gp whom is taking nilotinib to see if anyone else is at risk.
Im very upset by the outcome.but now i know why ive had 2 strokes last year.

This must be upsetting for you and I hope you can get access to an expert in CML and TKI therapies. 

Sandy

It took a stroke dr to pick on this
I have been referred to leeds hospital asap to undergo further investigation
My family and I are in shock and upset

hi there ive been taken off nilotinib in march 2021 as im in MMR for a few years now, but the damage is done. The oncologist i saw said that most TKIs can cause narrowing of the arteries.

 https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.23442  A study into nilotinib and strokes.

something that was helping me nearly killed me twice.

i was diagnosed September 2003. i have been on imatinib, disatinib and nilotinib

 

i was taken off nilotinib in march as i was in MMR.

due to my numbers going up i have now started taking Bosutinib.500mg a day. only day 2. it is conclusive that Nilotinb cause both the strokes i had in 2020. it could happen to anyone i was 49 fit healthy.

 

and also prior to this happening i had not seen a hospital doctor for 6 years.

i was not at risk nilotinib can give you risk of a stoke as many tki do 

Wow. That’s really scary.   My doctor last year wanted to put me on that but I refused.  I’m currently on sprycel.   But could be possibly resistant.   I hope that everything works out for you and you will be ok    Its really stressful having to worry about the possibilities of having a severe side effect or other cancer or stroke due to the tki therapies.   

I am 19 years living with CML on my 4th set of medication
The tki that's in nilotinib can cause strokes my oncologist didn't flag this up even after the 2nd stroke I was on the meds for another year .it was my stroke doctor that flagged it up. I'm on bosutinib now the side affects are not good but much less likely to have a stroke on this medication

Did you have any symptoms? I had a couple of episodes last year of what I would describe as sudden vertigo. It did not last but a few seconds but I wonder what caused it. I was dehydrated and drinking coffee in the hot sun one of the times so I don't know. My oncologist sent me to cardiologist and EKG looked normal. Anyhow, what were your symptoms? Thanks.

Did you have any symptoms? I had a couple of episodes last year of what I would describe as sudden vertigo. It did not last but a few seconds but I wonder what caused it. I was dehydrated and drinking coffee in the hot sun one of the times so I don't know. My oncologist sent me to cardiologist and EKG looked normal. Anyhow, what were your symptoms? Thanks.