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memory problems and Tasigna

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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 has been discussed on this and other sites, 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

https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.24495

Also found this study

http://www.bloodjournal.org/content/118/21/3771?sso-checked=true

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.  

Blimey. I too am on Tasigna but only 16 months thus far. I have not read about anything like this and maybe in some extreme cases it might mess with things. The prob is that the drug hasn't been around that long so we wont know until much later what damage it may cause while protecting us from a killer disease. It's a case of the best of 2 evils in someways taking toxic medicine but what can we do.

Are you saying she no longer is on any CML therapy as that is a great place to be? I have also read that Tasigna has been used to treat Parkinsons, seems it does a lot lol. I would say that anxiety and prolonged stress plays havoc with cognitive function, having CML I don't care who you are is a very stressful time wether you respond or not to treatment. We live with so much uncertainty, but we have a great hope with these medicines.

I hope you get the answers you are looking for.

All the best to you all.

Alex

Hi Alex - thanks for the reply.  Yes, she has been in remission for quite some time and the guidelines - at least here in the US - now suggest discontinuation of TKI therapy after years of remission.  However, the body adapts to drugs you are on and the idea is that by going "cold turkey" the brain has gotten used to the chemicals in Tasigna and now leading to problems without it.  So really just trying to find out if a going back on may help with the memory issues.  

I am on Tasigna and sometimes have brain fog.  It is probably due to lack of sleep however.  Prior to diagnosis one of the only symptoms I had was bad memory focus.  Somebody could be talking to me and halfway through I would be unaware of what we had just been discussing.  I worry about future symptoms but am happy to be able to live and thrive.  If, as you say, this could be caused by withdrawal I would get back on very low dose if possible to keep the memory symptoms at bay.  As Alex once told me he would rather have long term TKI than short term CML  I have no illusions that I will be off of TKI in my lifetime barring a miracle (which I still hope for).  I do want to lower dose however as soon as possible to keep other TKI symptoms at bay, or at worst very mild and manageable.    

Thanks for the answers! I hope you are doing alright now. My doctor told me he was going to prescribe me this, and I needed to decide whether I wanted to start this treatment or not.
There is a lot of reading on the topic, and my main concern is that I will start losing my cognitive abilities because of this drug. I have a predisposition to dementia because both of my parents developed it. I take a memory test every year now to see how it develops. And it would not be cool if all the progress I gained with exercising were gone because of this drug.
Did you manage to find some more research on this topic?

Thread continued from: 
Has anyone had to stop working due to tki side effects?