My sister was diagnosed with CML back in 2010 when she was 46 and was immediately put on Tasigna and had a quick move to remission. However, as you all discuss she did have side effects from the treatment - most notably memory loss. However, the side effects were manageable and she could continue to function - working full time and being a good mom to her 2 boys. Last year, after the guidelines were changed, her Hematologist discontinued her therapy. This was a relief - as she was always worried about the high cost etc - plus we all hoped her memory would improve. Unfortunately, it has gotten worse and seems to be failing much faster and was recently diagnosed after Neurological evaluation with mild cognitive disorder (which is very worrisome now and in the future).
I have been googling about all of this - wondering if the Tasigna could have been the cause - as she is very young to have these problems. While there is not much on this topic, I was surprised to find trials where they are using Tasigna to actually treat Alzheimers. This was interesting to me and i found out that unlike older forms of medications - it seems like Tasigna actually crosses the blood brain barrier and therefore can alter the molecular balance in your brain. So i started wondering if the drug can alter things in a good way - could the converse be true and it also can harm. So i found this case study report of 3 patients - which sound just like my sisters symptoms. .
Cognitive dysfunction after withdrawal of tyrosine kinase inhibitor therapy in chronic myeloid leukaemia://onlinelibrary.wiley.com/doi/full/10.1002/ajh.24495
Otherwise, there is not a lot about this as folks are just now getting off the drug.
Wondering if others have experienced this and also if anyone has gone back on Tasigna and if the memory loss slows or improves?
Does anyone know of any studies about this?
I spoke to her Hematologist and he had heard nothing about this and is planning to reach out to Novartis Clinical Affairs.