"Brain fog"

[Okay4now]

Some of you men in this forum speak of "brain fog"from prostate cancer meds. I'd like to know specifically how you would describe that. In particular, are there memory issues? I have enough memory loss to concern me. My pc drugs are: Lupron and Darolutamide. But I also take Lithium Carbonate, Lamotrigene, and Wellbutrin for depression, and some people complain of brain fog while taking them. And, of course, age is a factor; I'm 74. I would appreciate hearing from your personal experience.

[ARIES29]

Brain fog for me is walking into a room & not knowing why & not beign able to make definite decisions. I am sure most here suffer the same.

Exrecise helps & i take Magnesium L-Threonate for memory loss. My ADT now is Nubeqa as I could not tolerate Lupron.

[Okay4now in reply to ARIES29]

Thank you for your response. I've been taking Magnesium Glycinate, but I will try the L-Threonate. It's great that Nubeqa alone works for you!

[larry_dammit]

can’t really describe it well. I knew what I wanted to say but often couldn’t say it, names escaped me. I’d have to draw a picture of what I wanted to say in my mind and finally if I waited long enough I could say it.

[Okay4now in reply to larry_dammit]

Thank you, sounds familiar...

[Kaliber in reply to larry_dammit]

Yeah , I ……. Uh ….. ummmmm …. Er ……. Yikes ….

Some days it gets pretty bad ….

❤️❤️❤️

[London441]

Nothing is commonly experienced more by us than brain fog from ADT. And yes of course age is a factor.

Some supplements may help a bit, but nothing works to relieve it nearly as much as exercise. Also be sure to keep your mind challenged, especially by endeavors thoroughly unfamiliar. Great luck to you!

[Doctorsceptic in reply to London441]

Hi. I have commented below. As a retired doc I have been pretty disappointed by the apparent lack of awareness amongst oncologists and that patients are not warned of this risk.

[Okay4now in reply to London441]

Next month I'm going to the World Nomad Games in Kazakhstan - to attend, not to compete. That will be the most unfamiliar experience I've ever had. Thank you for your ideas !

[Doctorsceptic]

The term brain fog is used by doctors and patients. It is probably more accurate to call it “impaired cognition”. Then one can ask what aspects of cognition are affected.

I have experienced this with adt and enzalutamide and was not warned about it by the oncologist- I experienced making mistakes with arithmetic (bank accounts), and misunderstanding when reading. My visual awareness was affected - especially when driving and my wife kept pointing this out. Especially spatial awardness and driving too close to the left (UK). Eventually hit a parked car! My memory was not as good especially for names of people and things.

After several months off treatment I am probably back to normal except for memory.

The medical literature (Scandinavia) reports an increased risk of dementia with ADT. Altered visuo-spatial awareness is specifically mentioned. Perhaps not surprising when you remember that ADT can cause metabolic syndrome and type 2 diabetes which also are associated with dementia.

So yes, androgen deprivation affects the brain and in rather specific ways. I am now 78 and I suspect that these effects may be more apparent in older men.

If you Google adt and dementia or similar you will find the articles.

[Okay4now in reply to Doctorsceptic]

"Visuo-spatial awareness" is exactly right. I totaled two cars, 8 months apart. You say you are off treatment. Do you have a substitute, or are you just giving more attention to QOL?

[Doctorsceptic in reply to Okay4now]

I am now QOL first and off all meds! Am going to get a second opinion from a good experienced Edinburgh oncologist in October to review everything and help me decide the way forward.

I also know of a friend of a friend who, on androgen deprivation, became suicidal, got on his bike and rode straight into front of a bus - deliberately! Multiple injuries but survived.

Warning patients of visuospatial and brain problems should be mandatory . How many more out there?????

[addicted2cycling]

Can't reply regarding the *brain fog* because in April 2015 when my Urologist suggested ADT drugs be started immediately I told him to castrate me IMMEDIATELY. Best thing I did for my brain and so far doing OK for a 74yo GL10 eunuch who went out yesterday and bicycled 51 miles, 49 for our daughter's 49th Birthday and 2 extra just for good measure.

[Okay4now in reply to addicted2cycling]

Glad to hear that. especially after 9 years ! I also am 74. I've considered surgical castration, but aren't there still meds involved?

[addicted2cycling in reply to Okay4now]

ONLY thing I take is Dutasteride

[Okay4now in reply to addicted2cycling]

Wow!

[Jeremiad53 in reply to addicted2cycling]

I asked my Doctor to castrate me upon telling me of the treatments and what they will do... mostly reduce hormone levels. He scoffed at me, he also told me that if I didn't take the Covid vaxx I would die from Covid and not cancer. I laughed and said THANKS... I am still angry with him, in the hustle and bustle and shock of diagnosis, I did not have the balls to push back. The #1 thing I tell people is, get castrated immediately.

[Okay4now in reply to Jeremiad53]

Not a time for scoffing... thank you.

[vintage42]

"..."brain fog"from prostate cancer meds. I'd like to know specifically how you would describe that. In particular, are there memory issues?"

I am almost 82 and have been on Orgovyx ADT for 9 months and Abiraterone ARI for 6 months. For me, brain fog was not loss of any memory, or ability to think. I would call it more like attention deficit, where thoughts would interfere with an ongoing activity or a plan, especially if trying to do several things at once or in a sequence. It was a minor annoyance and I don't much notice it any more.

On the other hand, ten years ago my younger brother had several rounds of Lupron ADT and developed dementia over the next few years. His wife blamed the shots even though she was not a computer user who could have looked up the possible relation. However, he did have a slight problem with short term memory even before his cancer, such that he failed a telephone interview for long term care insurance. We are curious whether his dementia is vascular or Alzheimers or whatever. Last I heard, he was refusing to get a diagnosis of the cause.

[Okay4now in reply to vintage42]

Attention deficit is familiar to me. I have always daydreamed, but lately it's sometimes embarrassing. Like being in a group of people, trying to pay attention, but then the whole group laughs, and I have no idea why.

[Mascouche]

Brain fog is used as an umbrella term for impaired cognitive functions but it does vary in severity.

When I was on Lupron + Abiraterone, it was pretty bad on most days but especially so in the 3 to 6 weeks following each Lupron injections. I frequently entered rooms and wondered why I went there in the first place. Reading was often difficult as I could not retain a paragraph I had just read a second before.

I do not think it is simply the absence of testosterone because when I took an ADT vacation in May of 2023, my testosterone came back around August 2023 and my cognitive functions and ability to write computer code at the level I used to be able to before treatment only returned to normal in January or February 2024, so many months later. But at least, the loss of cognition was not permanent.

Sadly I've had to resume ADT in June 2024 but this time around with Orgovyx + Xtandi. On those drugs it is not as intense so far. Some days my cognitive functions feel normal while at other times, it feels like I've gotten somewhat drunk and when that happens I dare not drive my car or make important decisions. And then it returns to normal hours later or the following day. But I do notice a gradual though slow degradation in my cognitive functions on this drug combo too. So a number of months from now, I will have to take another ADT vacation in order not to lose my job as I am only 56 and retirement in not in the cards.

Hope this helps. Best of luck to you!

[Okay4now in reply to Mascouche]

Thank you, and good luck to you and your job !

[FRTHBST]

I am 68 and was diagnosed almost 6 years ago. Until last year I avoided all ADT. PSA spiked suddenly to 288 over a period of about 5 months after failed immunotherapy, it had been hovering around 30 for a few years, but had risen to over 60, hence the immunotherapy). Had three rounds of LU-177 with Orgovyx for 7 months. PSA down to .09, but couldn't tolerate side effects of Orgovyx. I had lost sense of balance, every joint was stiff and sore, perception and thought was like looking at the world through a bowl of molasses. Been off it now for 7 months, joint soreness is better, cognition still not normal, but improved. PSA going up and another round of LU-177 coming up with doctor specifying Orgovyx again, says there is a synergy. Not sure what my decision will be. What choices we are faced with! Came across this article from last year. ascopubs.org/doi/10.1200/JC....

"Results: In a cohort of 627,025 men with prostate cancer, 73,933 patients (mean age of 70.8 years) received ADT and 57,005 patients (mean age of 70.4 years) did not. ADT exposure was associated with a diagnosis of dementia (Alzheimer’s disease, vascular dementia, or unspecified dementia); HR 1.6; 95% CI (1.49, 1.73). Subgroup analysis by dementia subtype is highlighted in (table). Compared to non-ADT group, exposure to ADT was associated with a statistically higher risk of dementia among whites (78.6% vs. 77.7%, P <0.001), whereas there was no significant difference among African Americans. The risk of dementia with different ADT regimens is shown. Conclusions: This is the largest real-world study describing the association between ADT and the risk of dementia, including over 600 thousand prostate cancer patients. The risk of dementia was significantly higher in patients on ADT, with a 60% increased risk. The highest risk was witnessed with GnRH antagonists (degarelix), with a 92% increased risk. Interestingly, the increased risk of dementia in ADT groups was observed only among whites but not in African Americans. Possible causes of this discrepancy include socioeconomic disparities, bias that resulted in underdiagnosis, or biological differences.

It appears there is nothing imaginary about "brain fog", a 60% + increased risk of dementia with ADT or an unknown risk of early death without ADT. We need other treatment options, hammering the nail of testosterone reduction for the past 80 years hasn't been the answer.

[Okay4now in reply to FRTHBST]

60% !? Well said, thank you for sharing.

[dhccpa]

I get it but not from Lupron. I get it from regular cannabis usage. If I ease back, it seems to go away.

[Kaliber in reply to dhccpa]

lol 😂😂😂😂

[NecessarilySo]

There IS a link between ADT and cognitive decline. I consider my Lupron injections as necessary undesirables. One thought I've had recently was that because testosterone is necessary for brain function, the problem of cognitive decline from ADT might be eliminated simply by eating foods that increase testosterone. Many common foods increase testosterone, like nuts. bananas, grapes, and eggs.

[Eagleandme]

Hi, "brain fog" for me is the sense that I'm not totally present in a room - it's a feeling that defies adequate explanation. Also, word-finding is a small issue for me. I also tend to fall asleep at the drop of a hat while reading or watching TV. To conteract this, I walk, go to the gym, take and process photos, and do mental exercises like math and meditation. I've stage 4 prostate cancer since 2019, going thru multiple chemo and radiation treatments. Now I'm on Lupron injections and zometa infusions every 90 days plus Xtandi.

[Okay4now in reply to Eagleandme]

"Not totally present" is exactly right.

[GCMPD]

I'm a retired engineer with a strong background in mathematics. I've been on ADT for the better part of 9 years. In the first year, I lost the ability to do simple arithmetic in my head; it was quite disconcerting. Somewhere along the line, that condition improved. Along the way, I noticed significantly improved clarity when I was on ADT holidays so I do not think this was a function of aging. I no longer multitask well.

[Okay4now in reply to GCMPD]

Thank you for sharing the specifics.

[kiteND]

I recall learning from somewhere -- I cannot remember the source -- that cognitive impairment from ADT is very much like the early stages of dementia, whether it be Alzheimer or vascular, but that it does not progress. Also, I have never heard of anyone developing ADT caused brain fog later in the treatment.

I suppose, then, that one way to determine if the brain fog is due to the ADT or aging issues is to ask a few questions. What age did you start ADT? Was it an age where the onset of age-related memory issues could have started? Did the brain fog start when you started ADT?Does the brain fog seem to be getting worse over time?

[Okay4now in reply to kiteND]

Very good questions, thanks very much !

[Sagewiz]

My symptoms include not being able to follow-through on a thought. I often forget what I was thinking or working on a momment ago. Like I can't keepo two thoughts in my head at once.

I have also had about 4 bouts of confusion where I suddenly became unfamiliar with my surroundings. Not that I didn't recognize them, but that I thought I was someplace else and had a moment of confusion.

[Okay4now in reply to Sagewiz]

I do that too, like pulling up to a stop sign, and wondering where I am. Fortunately, it's momentary, as you say. Unfortunately, I have always been like that!

[j-o-h-n]

I had to go back and read your post at least a half dozen times or was that six times? I forgot.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Okay4now in reply to j-o-h-n]

Thank you sir 😂