Hi All,
I'm taking tasigna since almost 6 years and I'm in MR3 since almost the beginning.
I couldn't go below 0,02 BCR/ABL so probably I will never reach TFR with this medication.
However my physician freaks me out all time that tasigna has irreversable le long term cardio vascular side effects.
I could never really understand what are these and how frequent they really are, anyone has some insight?
On the mid term by the reason of the above he also plans to change to an other TKI.
Cheers
Nilotinib is not great in the long term for cardiovascular issues.
I know some hospitals are looking to move their longer term nilotinib patients to other TKIs as the long term risk / benefit of staying on nilotinib is very often not worth it.
These side effects don’t happen with everyone of course, far from it. So you shouldn’t overly worry but it sounds like your doctor is thinking about your future which is a good thing.
David.
Professor Jane Apperley of Hammersmith Hospital said that Nilotinib was hard on the heart and imatinib hard on the musculo skeletal system;she also said that due to the fasting regime if you are a drinker of alcohol then this tki is not for you. A typical case of where you might avoid this tki is if you had an irregular heart beat or atrial fibrilation (Afib))-the drug would deepen this condition;in addition long term use might bring on this condition .Long term Afib will heighten the chances of a stroke so you may then need to take blood thinners (as a precaution) that themselves might interact with your tki-a difficult choice.
All tkis have their own and common or typical side efects-for instance with Dasatinib 1 in 5 patients suffer pleural effusions .Bosutinib is known for raising blood sugar and blood pressure, sometimes to concerning levels, I have read.
Regards
John
Hi
I’ve been on Nilotinib for just over 6 years. Currently MR4.
This very discussion was raised with me at my last consultation and they will be monitoring my cholesterol and diabetes annually. I believe heamos have recently had some guidance on recent long term data. I knew Nilotinib was very toxic from the outset so as long as it’s monitored I am not too concerned yet. In fact it forces me to take extra care of my heart and other organs with diet, supplements and exercise.
Al
I was taking nilotinib for 7 years.i had 2 strokes in 2020 still taking nilotinib for one year after both strokes it was the stroke doctor that said nilotinib was the cause.
It's been on the medical journals since 2013.
I have successfully sued the nhs.but I'm left severely disabled at aged 53.
There has been many sued the drug company in the USA.
