memory recall and venetoclax

[lisakc1]

Anybody experience memory recall issues while on Venetoclax? If so did it get better after treatment? Just asking, as my husband had never had a stellar memory and don’t know if the meds could be making matters worse . Thank you once again to all!

[CycleWonder]

It’s hard to tell if a new symptom is directly related to a new medication or indirectly. He might be stressed, suffer headaches, be uncomfortable, tired, depressed, nauseous or distracted, all of which have caused my memory to suffer.

[lisakc1]

Are you still on it? Noticed improvement after completing treatment? Thank you!

[Shepherd777]

As my wife's caretaker it takes a toll on my energy, and I get distracted and concerned about every little change in her wondering if the CLL is coming back, what med will we use next, can we afford it, etc. I am not on Venetoclax, but my memory has taken a hit while she is on the oral meds. Also, I am now 8 years older than when she was diagnosed with CLL. Her memory hasn't changed as near as I can tell. Ha Ha 😁

[lisakc1 in reply to Shepherd777]

Thank you! This caretaker job isn't an easy one, I'm right there with you!

[roszika]

I did not have any memory troubles while on V for 2 years,nausea every day but that was it

[lisakc1 in reply to roszika]

Thank you!!

[RosettaClapp]

I had memory problems whilst on V which have gradually improved in the year since I finished my 1 Yr treatment.. Things like remembering phone numbers and passwords were noticeably. It's reassuring to hear other people experience similar nuisance

[lisakc1 in reply to RosettaClapp]

Exactly! He is on cycle 7 out of 12 and we are counting the days!

[Fastbike14]

Can't really answer your question but I've been on Venetoclax 7 months and not noticed any change in my memory. Always terrible with names but good with faces. Everyone's memory works in different ways and for me to remember a name or a person's history I have to visualise where they live and the journey to their house. Then it's total recall. Good luck with your memory.

[lisakc1 in reply to Fastbike14]

Its a journey! Thank goodness for iphones and reminders... that's been a godsend!

[Murmeli]

I am on V since about 4 months. I do not have any side effect except for fatigue linked to low blood pressure (was low before V and is now even more expressed as low).

I noticed rather the opposite😀. My memory and concentration ability improved. I associated it to the fact that I started the treatment journey, lab / blood improved and I might be more relaxed compared to before treatment. A kind of confidence growing that life continuous and it is a good one.

[lisakc1 in reply to Murmeli]

I think low blood pressure is not nearly as bad as high blood pressure, right? Thank you so much for your reply, he has had issues with neutropenia, so its been a rocky road, but hoping that things get better soon!

[Murmeli in reply to lisakc1]

Agree, unless it goes together with dizziness, headache etc. It is not he case with me only the fatigue, which I try to manage with some exercise to re-energies😊

[Pearlpink]

my memory deteriorated with the CLL. It was always worse first thing in morning or when I was tired.

Lots of people have cll and don’t get any “brain fog”, but I got short term memory loss, reduced facial recognition, and fatigue after some bad infections - not knowing I had CLL.

Weirdly I lost virtually all ability to remember a string of numbers, so those PIN numbers the bank etc send you were a nightmare!

Within 4 weeks of starting V and O I could remember a string of 6 numbers! Felt like a minor miracle , so I know it’s improving. However I do feel wiped out sometimes on the treatment, and at those times my short term memory is hopeless!

So I personally think it’s related to the Cll in my circumstance. Made a little bit worse by the exhaustion on my treatment currently, but with snippets of the real me! So as the treatment works it’s magic I expect to see an improvement in my memory etc.

of interest, I also got emotional lability (crying at random, and getting irrationally grumpy) as my CLL got worse. That’s starting to improve with treatment, but can happen out of the blue after an infusion! Must be very difficult for a partner.

I use my phone to remind me of everything! I never remember the stories my mum tells me, and I sometimes feel bewildered by the changes in me, but I think it will all return after treatment!

most people don’t get the same degree of “brain fog”, as we are all so different!

[lisakc1 in reply to Pearlpink]

That is so good to know! My husband has also had a few emotional reactions to things that are out of the ordinary, thank you for reminding me that we are not alone in this journey!

[Big_Dee]

Hello lisakc1

I have noticed I have memory problems since having B+R treatment and just getting worse since being on V&O treatment. I am not sure it is related to CLL treatment, maybe because I am getting older. I can remember things but sometimes it takes me awhile. So far it has not effected my appetite.

[lisakc1 in reply to Big_Dee]

You are not alone in that! Going to encourage a more rigorous exercise regime along with healthy eating.... hoping this all gets better soon! Thank you for your help!

[Squeebz]

Like your husband, my memory’s never been great. I started Venetoclax about 6 months ago, and have recently started to experience new memory issues, particularly nominal aphasia (dammit, what’s his name / what’s it called?) I’ve still got 18 more months to go, so can’t tell you if it’s improved when v/clax stops. Hell, I hope so …

[lisakc1 in reply to Squeebz]

Thank you so much! Yes, all of this info helps more than you know!

[bettyba]

Hello - yes I have had problems with memory call but it was put down to multiple sclerosis, menopause and having cancer. I cannot get words out - I can see a picture of the item in my brain but unable to say the word until it comes to me either later in the conversation or that evening or the next day. I had know idea it could be a Venetoclax issue. Unfortunately, with having so many co-morbidities my consultants and doctors never really want to find the real reason for my issues as i'm sure it's too mind boggling for them - so I have to get on with it all and find my way. But I have a call with my consultant soon and will ask the question if the issue has been discussed previously. take care.

[lisakc1 in reply to bettyba]

You are amazing! Thank you so much for your help! He is on cycle 7 out of 12 and we're counting the days!

[lisakc1]

Oh no, so stressfull, hoping for better days ahead!

[ChrisLovesLife]

I'm 26 months post Venetoclax and it's getting a lot better but I was still diagnosed with neurotoxicity. My team thought it was due to a drug trial with Umbralisib but it very well could be the V because I started it 6 weeks after the U and stayed on for 25 months. Sometimes I feel like my brain is fried, usually if I don't sleep well or get a minimum of 7 hours and exercise helps but it's a daily battle. I didn't trust myself to do my work with contracts anymore so it's the main reason I am disabled now. I feel like it might have been a trade off to save my life? All the best in recovery, there is still good quality of life!

[WittyApricot]

Yes I’ve been on venetoclax since August and had cognitive issues right away: difficulty focusing, memory issues, difficulty accessing words etc. I felt like all the concussion symptoms I had back in 2013 came back.

I’ve been doing all kinds of word games—my phone I am able to download word game apps,number game apps—-they really help me keep focus, but I do still have issues. They are a bit better but don’t ask me too much early in the day I find my best hours are between 10 and 2. I take my V at 9 pm every night to alleviate some symptoms.

[lisakc1 in reply to WittyApricot]

Thank you so much for sharing! It feels so much better to know that he is not alone... this year has been a very long year.. counting the days for sure! Thank you again and hoping that remission brings a relief to these symptoms!