MEMORY CHANGES

[JDG45]

There have been limited posts about memory changes while on targeted therapies for CLL. I have noticed a decline. After about 2 years I will end the trial taking Acalabrutinib and Venitoclax in a few weeks. Has anyone seen an improvement in their memory since ending the meds?

[Teemed]

I was a straight A student , 2 Masters degrees and my career was as a consultant because I could remember and do complex problem solving. After starting Calquence and thyroid medication I definitely had a decline. 3 years into it I see improvement by still not back to where I was.

I focused on diet and exercise and MCT oil and perceived an improvement . I hope you experience some improvement!

[JDG45 in reply to Teemed]

In 3 weeks I'm off the meds and can try supplements. Reviews on MCT oil are good for memory.

[Zigster49]

Hi JDG45,

I started Acalabrutinib + Venetoclax study in June, 2023 and will be ending in May, so I can’t comment on being off of it completely. However, approximately 4 months ago, because of worsening fatigue, my dosage was cut to one hundred milligrams of Acalabrutinib and two hundred milligrams of Venetoclax per day (half of the original dosage). I have not seen an improvement in my memory, not surprising at my age, but I have seen an improvement in my cognitive ability. My ways of measuring it are through NYTimes puzzles and my success in following directions in weaving and crocheting patterns that previously I couldn’t seem to follow.. I’m hopeful that I will see more improvement once I finish the study.

Congratulations on making it through!

[JDG45 in reply to Zigster49]

Thanks for your reply. I saw a neurologist who suggested I get an MRI and PET brain scans, sleep test and hearing appt. if there were prob lems in those areas my anxiety levels would increase and that is not good for the gray matter. She said had a MRI brain scan - report was normal for a person my age of 79. I had a sleep test in the hospital to see if I needed a C-pap or something else. No report yet. Also had a hearing test and am losing the high frequencies. The audiologist suggested seeing a ENT doctor that would evaluate if a hearing aid would help out. The neurologist suggested I join a group online to improve memory through exercises. I may do that.

[Spark_Plug]

I'd be interested if any in W&W have lost some mental acuity? I heard of brain fog from the meds, however my wife has observed a change in me? I tell her no, not until I need some therapy will that happen - she begs to differ. . .

[Wonderwoman23]

Hello, I just completed the Majic Trial. A&V for 2 years. I did not find a consistent issue with memory or cognition while on the regimen, but definitely could associate mind cloud days when I didn't sleep well, or when I didn't listen to my body when I was fatigued and rest. I definitely feel there was a correlation between fatigue and my cognition. I have been off of the meds for a month now and my fatigue has been much less. I found that the medications also made me hypoglycemic at times, and also dropped my already low bp further and these things contributed to fatigue. Keeping my blood sugars steady throughout the day and hydrating well made a difference. I hope that helps, and that you experience a rebound in your memory soon!

[JDG45]

Did you have any issue with eyesight like double vision or changing prescription?