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
Memory loss with Ibrutinib?: I was diagnosed... - CLL Support
Memory loss with Ibrutinib?
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.
Sue
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.
Sue
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...
~chris
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... 😳
I will have been on Ibrutinib 2 years this July 2017. I have noticed that my short term memory has gotten very bad in the last 1 1/2 years. I am 55 years old. I have been on Klonopin-an anti anxiety med for 20 years. I fear that the combination of the 2 drugs may b causing my memory issues. I am glad they found the drug interaction between Cipro and Ibrutinib. I was on the 2drugs and had severe blisters appear on my feet. (They were huge-an inch long and puffed up about 3/4ths an inch high.) Drug combinations can do scary things!! I did go 2 weeks ago and had all day memory testing done. I have some memory issues but they believe it is all stress/ anxiety induced. I feel that they sometimes don't want to believe there could b something negative with the drug so they just ignore my issue. And of course with being on anxiety med just gives them a good excuse. Anyone else noticed memory issues? Also, I realize that most people on this drug are at a much older age and that the memory issue wouldn't necessarily "stand out" with these patients.
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.
I've been on Ibrutinib for 2 years now and have had some definite issues with memory. I also had 6 cycles of chemo at the beginning of the 2 years. I'm 56, no other health issues, and the only other drugs I'm on were prescribed with the Ibrutinib: acyclovir and atovoquone. It could be partially age I guess, but prior to the treatment, I had no problems with memory.
Ibrutinib from 2012 thru2015,,, tremendous memory loss but I didn't know about it until this year . Family told me about things that happened , like a vacation in 2014 ????don't remember going .....Accountant asked for some info on a company I set up in 2013 ?? What company ?? Major happenings in my life ...Not a hint of memory .
I am 78 and have minimal short term memory loss, but I still do not know how much long term stuff is gone ?? I reported this to my Oncologist and was told it is not a side effect of Ibrutinib , at least he had never heard of it ...you and I know it happens.
Like your doctors, I also doubt it can be attributed to Ibrutinib, but IMO it can certainly be attributed to aging.
My wife and I are on either side of 70 years old, and both of us have experienced random "memory holes" like you describe.
I am now on Venetoclax, and only used Ibrutinib for a short time, my wife does not have CLL, nor any cancer, but we see our missing pieces of memory similar to what we observe often with my 92 year old mother.
All three of us have excellent long term memory and decent short term memory, but gaps occur in things that happened in the last 5 years.
We attribute it to "bad sectors" in our hard drives.
Len
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