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Anyone else experience cognitive/memory issues while on TKIs?

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Ever since starting TKI treatment ten years ago - and I've been on all of them except for ponatinib - I've experienced cognitive decline (mainly memory, word retrieval, and processing speed issues). I know correlation doesn't always mean causation but ever since starting TKI treatment I've just never been as sharp. I'm male, started treatment when I was 35 years old and I am now 45. It's been progressive too. It's now to the point I can no longer do my job. I've searched to the end of the internet and back and can't find much of anything about TKI's crossing the brain blood barrier or cognitive side effects so I'm now asking online forums like this one. My doctors don't believe it's the TKIs. I live in the U.S. and am headed to Mayo Clinic's neurology department in a few weeks to rule out early onset demensia, MS, and other disorders.

Best,
Brown

Hi, I’m 47 and I’ve been taking glivec for 21 years now and I definitely struggle with this , I can’t remember peoples names , words, what I’m doing etc!! Its very frustrating, this has been going for years and years x

I'm so sorry to hear this and unfortunately can sympathize! Has anyone ever linked your issues as a known side effects of Gleevec?

No but I do suffer with chronic fatigue and brain fog is a symptom on that x

I didn't find that with immatinib or Nilotinib but now i am on asciminib i am suffering with that. But i had a complete change of medication 9 months ago and i also need interferon for ET so i assumed it was that. I do find names allude me and yesterday i was in a personal training session and i was told what to do and immediately forgot. A quick reminder and i am back in the room but it is very odd and i definitely couldn't work with a brain like this. Luckily i have decided to retire so that doesn't matter. I had a pretty good brain and memory before this . I am sure we all react differently to TKIs and there are probably side effects they haven't yet linked to them.

Hello Christine,

Are you taking interferon together with Scemblix and is it the pegyleted one? Would you please share some details about it e.g. how much, how often and how long you have been taking it?

I was on Scemblix 80 mg for 6 months between july and december. Initially I responded well after first 2 months, but then there was no response over the next 4. I also accumulated too much fluid around my waist, to the point when I couldn’t breathe, so I had to stop it. In december I tried just 50 mg, but bcr started rising.

In january 2024 I had 88 kg, then 6 months on Tasigna got me to 96 kg, which was manageable but I started experiencing heart issues, and then on Scemblix I reached 102 kg.

I am now on Bosulif 400 mg so will see how it goes.

I discussed intereferon as an option with my doctor who is not cml specialist. He said the minimum treatment duration is 6 weeks which amounts to 4 injections, 1 every 2 weeks. I know that it can repair our immune system, but he just said that it resets it and stabilizes the disorder. He also mentioned that I cannot take any tki while on interferon, but after the therapy, he said most likely the tkis I failed would work again. In his experience the pegylated one causes mild side effects.

If Bosulif doesn’t work for me, I think I should try interferon.

Thanks
Zoran

Hi Brown,

It may help if you reduce carbs and sugar. For me, water fasting helps and after 2 days I notice a massive declutter, it’s like my brain switches to the next gear. I now do it when I need full throttle e.g. before exams.

Btw, my doctor advised against fasting, but I think I should do it regularly. You can find the research papers on fasting and it’s dramatic effects on cll, but unfortunately not on cml.

The most significant cognitive effect of imatinib that I experienced, was that I became a bit autistic. I wasn’t aware of it till a 6 months break due to some skinn issues, but then it melted away and I realized it developed slowly over the years, like cooking a frog.

Thanks
Zoran

No i am not taking scemblix. I have essential thrombocythemia (too many platelets) as well as CML. The interferon (pegasys) is not for CML I take 90ml every 4 weeks currently to reduce my platelets.

Ok thanks