ADT Side effects?: After 5+ years on... - Advanced Prostate...

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ADT Side effects?

jtspitfire profile image
36 Replies

After 5+ years on Lupron/Abi/Pred I've recently noticed my powers of concentration and attention span have notably decreased. Perhaps this falls under the broad category of "brain fog"? Or could it be a natural result of aging? I'm 75.

Thanks for any thoughts you might share.

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jtspitfire profile image
jtspitfire
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36 Replies
Izzysdad profile image
Izzysdad

I’m 4 years on Eligard and Erleada. I’m 73. I’m not sure either if it’s age or brain fog but I tend to think it’s probably a bit of both. I find I really need to concentrate when I drive in a city or work with my power tools. Don’t even listen to the radio. Otherwise haven’t noticed any impact on memory or attention span.

jtspitfire profile image
jtspitfire in reply toIzzysdad

Thank you.

Gabby643 profile image
Gabby643

probably a little of each

velobard profile image
velobard

I'd say both. I began Lupron when I was 49, shortly before my 50th birthday. That was in 2010. I won't go into the whole journey here, but by 2018 I needed chemo and while undergoing that I finally admitted that I had lost enough of my mental edge that I couldn't perform on the level to be worth my previous rates as an IT contractor. I applied for SSDI under their compassionate care program and was approved in a month, first try.

Lost_Sheep profile image
Lost_Sheep

Basing your Lupron experience on my Orgovyx experience, I would say the odds are good you are experiencing cognitive decline from the hormones.

Here's my reasoning: I was on Orgovyx from Mid-May to Mid August 2024 and experienced some memory problems. Mild, but there. Could have been stress. But when I terminated the Orgovyx and used only high-dose estratiol, the memory problems went away. My testosterones and PSAs continued to decline using no Orgovyx and only the estradiol. So the memory problems could not be attributed to low Testosterone.

kreg001 profile image
kreg001

I believe my initial doses of Lupron had a deleterious effect on my work product documented within my laboratory notebooks where my entries became almost incoherent and often incomplete. I had to concentrate very hard to once again have clarity. Fortunately I had a good group of colleagues who helped me stay on track. When I went on bicalutamide mono therapy, a Lupron vacation, there was a clear improvement in my documentation.

I participate in the Cleveland Clinic Brain Study and if I was testing positive for dementia they are obliged to inform me. They haven’t.

I retired two years ago and ended monotherapy a year ago. I’m probably fogged but it isn’t as harmful as I’m home or traveling with a supportive and understanding spouse.

cesanon profile image
cesanon

You can always take an adt vacation. I would do that under the supervision of a BAT expert.

London441 profile image
London441

The drugs take a toll on every aspect of health, including cognitive function of course. Engaging the mind via unfamiliar pathways can help. And all the exercise you can stand-it helps more than anything else by far.

Explorer08 profile image
Explorer08 in reply toLondon441

Your comment about the importance of exercise is spot on correct!

Tommyj2 profile image
Tommyj2 in reply toLondon441

Why is it that you say exercise helps more than anything by far? I hear approximations of this statement frequently and it is disturbing to me as one who is severely limited in the amount of exercise I can do due to arthritis….how exactly does exercise help so much?

London441 profile image
London441 in reply toTommyj2

The two metrics that are most significantly associated with longevity are strength and cardiovascular fitness.

Exercise keeps mitochondria flowing and regenerating, the very essence of cellular function. Like everything else, its production slows with age, impacting health in a number of ways.

Heart disease kills more than 350,000 men per year in the US alone. Prostate cancer less than 1/10th that. Exercise obviously protects the heart. Loss of muscle mass declines with age and the rate of that loss accelerates acutely beyond 70.

Therefore, both strength training and cardiovascular exercise are essential.

Many older people become unable to take care of themselves and are incapacitated far too soon simply because they stopped moving.

Besides heart disease, diabetes , cognitive impairment, high blood pressure, obesity and a myriad of other issues are created or exacerbated by inactivity.

I have arthritis in my hands, neck, back and knees. Exercise has the power to minimize or even eliminate arthritis pain and low function entirely. I am living proof of this.

If you are truly unable to move or are severely limited I am sorry. However, there is almost always a form of exercise that we can do regardless of condition. Arthritis is definitely one of them.

I suggest finding a trainer who is skilled at working with severely arthritic people. They can be found.

Don’t give in if you can at all help it! Exercise has the greatest power to determine how you will live out the rest of your life.

Jac_J profile image
Jac_J

Been on Eligard for 3 years. Now 58 years old.

Physically pretty good.

Recently lost a game of chess to my wife. Devastated.

Ian99 profile image
Ian99 in reply toJac_J

Chess is a great way to keep mentally sharp imo. Get on chess.com and you can play any time. A slowdown with age is normal, but should be gradual.

PSAed profile image
PSAed in reply toJac_J

😂😂😂

4tunate1 profile image
4tunate1

Coming up to completing my first year on Abi/Lupron. Brain fog is definitely a thing. I'm 60 and still working but this last year has definitely been a battle of stuggles with completing work assignments, standing in the kitchen wondering what to do next and the occasional 'where's my phone?'. It could be age, but it's happened so quickly I definitely think the meds are most of it. Exercise and being outside breathing outdoor air help me.

Wgly profile image
Wgly

I found a marked mental decline after starting ADT with Zytiga two years ago, also fatigue and weakness. Had to quit Xgeva about six months ago with some noticeable improvements which made me more aware of SE's. Now seriously going for a drug holiday as P and T undetectable for more than a year. Pushing 85 yo.

leo2634 profile image
leo2634

Both it's a great drug to keep us alive but the quality of life leaves much to be desired. Never give up never surrender Leo

mababa profile image
mababa

I’ve asked myself the same question. I’m 72 and a former engineer. I’ve always been able to manage numbers and arithmetic calculations in my head. But these days it’s much more difficult and I make mistakes. I’m coming up on my one year anniversary for ADT (Orgovyx) and have been on abiraterone for only 2 months. Yes, age is responsible for some of this, but my “sense” is that the drugs are accelerating the condition. I experience momentary confusion doing some mundane tasks that I never had before. While my normal activities (maintaining our property, golf etc.) haven’t been impacted much, I do find my self having to concentrate harder to get things right on the first attempt. I’ve got 2 years prescribed for my ADT-ARPI regimen, following the Stampede Trial recommendations for N1M0. I plan to keep reporting my progress. Best wishes with yours.

j-o-h-n profile image
j-o-h-n

What?

Good Luck, Good Health and Good Humor.

j-o-h-n

pjd55d profile image
pjd55d

I do puzzles - solitaire games, play Mexican Dominoes with some guys who are pretty cut-throat players - any brain activity. Interesting, some of my fellow players are younger (5 - 8 yrs ) and I notice they slip sometimes - though none of them are on ADT. A big part of it is aging - and stress. I don't like the side effects BUT its a price I am willing to pay to be alive. Still find life enjoyable and often very sweet

best

PJD

7OaksTom profile image
7OaksTom in reply topjd55d

I recently played Mexican Train Dominoes for the first time since I started Lupron and Xtandi. I was astounded when I tried to set up my potential trains. I simply could not see the connections like I used to. This was the most astounding evidence of the brain fog I have been noticing. Also, I am missing a lot plays when playing Spite and Malice with my spouse and losing almost every game. I certainly can't do simple arithmetic in my head. I don't think it has much to do with being 78.

NecessarilySo profile image
NecessarilySo

I'm on Lupron over 4 years straight, quarterly now and I think you are right, something weird is going on with my brain. I keep forgetting what I am about to do, and I find it difficult to follow other people's conversations, like lack of ability to concentrate. It might have something to do with using my computer, which keeps interrupting my thinking, kind of like a merry-go-round. But it might be something like low T causing the problem. T is necessary for brain functioning.

gsun profile image
gsun in reply toNecessarilySo

What about women? they have very low T and a most have very good brain function.

dhccpa profile image
dhccpa

Could be. I've been on Lupron for over 6 years now and it sometimes feels that way.

Neathuh1 profile image
Neathuh1

Hi. I’m 76. I’ve been on Lupron every three months for years with only one slight pause several years ago. Had to get back on it as my PSA began to rise. Brain fog has become so irritatingly noticeable over the last year that my wife even thought I needed cognitive testing. Ouch! However, due to travel, holidays, etc, I had to schedule my next injection almost five months out from the previous one. And I’m so happy ro say that I feel like I’m back to my old self and my wife is so relieved. It leaves me questioning whether to get the next injection or not. I hope, of course, that my PSA has behaved itself in which case I’ll continue my holiday from the Lupron. If it has risen, however, I’ll have to weigh and measure the pros and cons of getting back on with it. I have two oncologists who disagree about this strategy which only adds to confusion. Anyway, don’t blame being 75, we’ve still got some mojo. I’m sure it’s the meds. Hope you find this helpful. God speed.

GoBucks profile image
GoBucks

No doubt that ADT puts us in a brain fog state. Of course getting older doesn't help but it's what we all want. I kept a log of my brain lapses. Favorite entry: I did something stupid yesterday but forgot to write it down. I'm off ADT 2.5 years now and greatly improved. Exercise both physical and mental are very important. But that dang Connections game is driving me crazy. Wordle, Quordle, Strands & Waffle are part of my daily routine.

TJGuy profile image
TJGuy

So I was on Lupron for 2 years at age 59,60. Yes my mental abilities diminished, my memory went to hell. I began needed GPS Maps to get where I needed to go. Names, words, places I began searching for.

I couldn't remember things, I stopped trying to remember things, I simply saved articles where I could read them, remembering the facts became impossible. I had retired years earlier upon diagnosis. I am sure I would have no longer been able to perform my job in IT, I lost my problem solving ability

So I then went off Lupron in 2021 and have been off all drugs, Lupron was the only one I was taking for PC.

My withdrawal from Lupron took the better part of a year, after several months I began to feel changes and most of the recovery occured in the first six months. But full mental and memory recovery took a full year.

So yes this is just the mental impact of Lupron, there are serious devastating physical impacts from taking Lupron. And of course being on ADT eventually leads to castrate resistance.

My plan has been and is to stay off ADT and been using PSMA scans and radiation to attack and kill the limited lymph node metastases, so far this has been very effective for me, everyone's PC is different and that may not be possible for others.

hghgsgej profile image
hghgsgej

A low-dose estradiol patch can help with bone loss, hot flashes, and cognitive issues. It's the "wrong" sex hormone, but better than no sex hormone at all. And actually, it's only to replace the amount of estradiol a male normally has. I've been using it off and on for years, and I never have hot flashes. There's been some cognitive decline, but some of that is from aging.

Mgtd profile image
Mgtd in reply tohghgsgej

I tried to research your bio there was nothing. Could you please discuss your PSA history and level of disease? Thanks.

jtspitfire profile image
jtspitfire in reply toMgtd

will do

jtspitfire profile image
jtspitfire in reply tojtspitfire

Done.

hghgsgej profile image
hghgsgej in reply toMgtd

I've updated my bio.

gsun profile image
gsun

Been on ADT for six years. Brain function compromised about two years ago. For instance, I knew all the abbreviations used on this forum unless I hadn’t;t seen it before. Now, I have to look up a lot of them as well as drugs. I can’t remember which drugs are for T levels or maybe for immunotherapy, etc. I’m 71 and shouldn’t be there yet.

SteveTheJ profile image
SteveTheJ

Everybody is different. I have taken Erleada and Lupron for almost 5 years and have daily episodes of brain fog to one extent or another. I find that 200mg Provigil most days really helps. Ask your oncologist.

Stevecavill profile image
Stevecavill

massive brain fog here, after 12 years of ADT on and off.

I’m only 62 now, 50 when diagnosed. And I get super annoyed when people say my brain fog is normal aging. 62 isn’t old!

Mgtd profile image
Mgtd in reply toStevecavill

I agree! Wish I was 62 again.

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