Memory loss with Ibrutinib?

I was diagnosed with CLL In 2012. I was put on Ibrutinib until I was declared in remission in December 2015. Since then I have been made aware of several major changes That occurred in my life during that period of time that I have no recollection . Four instance, every Christmas holiday we spend with our family at our vacation home. When I asked for the pictures of the 2014 holiday I was told that we did not go on holiday that year. While doing my income tax this year my accountant asked me for information about a trust that I set up, I have A faint recollection of Setting up the trust but I am not aware of the facts. There are many more instances, but I am aware of every detail in my life since January 2016. Does anyone know or have information about the possible loss of large pieces of life while on iBook? Fish 61

14 Replies

  • iBook should be Ibrutinib.Fish 61

  • Sorry fish 61, I cannot help with reference to your memory loss. Just wondering if you can remember anything from that period of time not just those two specific things.

    Hope you can get some answers soon.

    Best wishes.


  • I remember some thing nut many are lost completely

  • I just think they should investigate this a bit further for you instead of dismissing it as "your're the first".

    Hope this gets sorted for you..

    Best wishes.


  • I'm just a layman, 9 years with CLL, now 47. Had ibrutinib for 9 months. And other treatments at various times. I have not heard of ibrutinib having that effect.

  • We go through many challenges that can induce stress which can cause problems with memory. I feel age and treatments have caused problems with my memory overtime.

  • Fish 61 - i concur with MsCll.

    with all the stress i've had this year waiting for my diagnosis and dealing with other health concerns - i'm not even on therapy yet and i KNOW that stress causes MY memory issues! i believe we are so involved about what's going on in our bodies that other things get pressed back into our memorybank. we filter what's really important. i only say this to assure you that stress has a large part to play with this - in my humble opinion. good luck to you!!

  • I've only been on ibrutinib for 6 months. I've not noticed any changes in memory so far. My memory is affected at stressful or traumatic times though, but I think that is independent of treatment. I hope you find an answer.

  • 28 months on ibrutinib & so far, no one is telling me that I am having memory problems, at least not that I recall. Of course, I wouldn't be able to diagnose myself. Alzheimer's does run in my family but I'm 10-12 years too young for that yet. My wife does seem to have some memory problems or misplacement issues. I'm forever helping her find her glasses, keys, remote control, etc. All joking aside, Fish61 I am hopeful that your memory problems are improving and probably related to the stress of our disease. Other than nagging side effects, ibrutinib has been a good treatment for me.

  • Thanks everyone , as I suspected my case is unusual..It is strange that I remember everything that has occurred since I was taken off the drug.Dr W Wierda at MDAnderson says that he has no patients that have this experience.

  • I'm surprised they didn't do an MRI when this occured, because there have been brain bleeds on Imbruvica (ibrutinib)...

    New research just last week has shown that Imbruvica (ibrutinib) can pass the blood/brain barrier, which many drugs can't do, so this might open a new treatment for certain central nervous system lymphomas and perhaps, Richter's in the brain and spine...

    Glad you are off the drug... we still have a lot to learn about these things...


  • Thanks for the info Chris, The memory loss was not realized until two months after I was taken off of Ibrutinib.I have noticed that the combination of Plavix and Ibrutinib have caused my arms to look like a four-year-old has practiced finger painting on them.

  • You should report this to the FDA, there is a patient website for side effects etc...

    I was on Imbruvica (ibrutinib) and Xarelto, and Xa inhibitor, a new class of blood thinners and it was not a good time... there is no antidote either... only cessession.

    I reported it ... but at least they have moved on Cipro, it now carries a dose reduction... I had the pleasure of being on that as well... 😳

  • Chris, thank you so much for your diligent searching and posting of the pertinent information. I had seen the information you refer to about the blood/brain barrier; but could not locate it for confirmation of my own bit of foggy brain not related to any treatment.

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