Advanced Prostate Cancer
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Brain Fog

I am tired of telling my story, so let me keep it brief: diagnosed 2004 (brachytherapy [failed]), salvage RP 2010 [failed], currently on Zytiga.

The various ADT drugs that I have been on more or less continuously since 2004 have affected my memory greatly (short term especially) and my ability to think logically. My wife is now finding this trying. So, a couple of questions: do others here have brain fog issues? If so, how do you cope with them?

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Can you repeat all of that please?

Seriously, I have the same problem and it seems like every time I complain about it to anyone I get the same response: me too. It is a pain in the ass when I am standing in front of the open refrigerator with an empty bowl in my hand thinking to myself "What the f*ck?"

These kinds of "brain farts" seem to be more and more common as well as that overall fog or inability to think straight.

So for me, it's just like any other side effect. It depends on how much it interferes with your ability to function and/or reduces your quality of life. One thing I learned soon after being diagnosed with PCa is that it's always a series of trade-offs. You gain something, but always have to trade something away for it. I do think it's a common problem, I think having chemo has made mine worse. I try to do things to exercise my brain, just as important as physical exercise in my opinion. That seems to help me. I also try to get help from others when possible for those times when I am having a hard time.

If it's severe enough you could discuss it with your doctor.

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You have a level head friend.. I’ve yet to have chemo ,something to look forward to. Haven’t heard from you in awhile . Thanks for chiming in ..Glad to hear from you. Take care..

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Thanks, I've been posting more lately.

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I smoke pot (just a little) and listen to late 60's rock. Honest. When I'm finished doing that I read from a book, (remember them)? It clears my thought waves and I'm mentally back on track.

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I’m with ya in all three..

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How do you find a doc that will right a script for pot? They all charge hundreds of $$$ here and I am on disability and retirement.

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I live in a medical marijuana state so I don't need a prescription ... just a medical marijuana card that gives me access to dispensaries. A one time expense for the card is not cheap: $150 for the 'reefer doctor' who examines your qualifying medical documentation and passes that on to the state, for $150, then the state charges $150. These same basic charges for annual renewal.

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Soon in Canada, the Prime Minister will declare the country to be Cannabis friendly and will instruct all the radio stations throughout the land to play Bob Dillon’s “Everybody must get stoned”. The federal government is planning on reaping billions in tax revenue to fund their programs and hopefully some serious trials can be completed as well.

Even now the product is readily available via mail order or delivery, the police stating that they’re not going to bother with simple possession charges for a crime that will be legalized by the time a court appearance can be set.

High times ahead, my Canadian friends.

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I'm from the midwest with no medical pot in my state. I've been to CA twice this year and brought back edibles in my carry on both times, no problem. Edibles are not as easily detectable as the real stuff. If you are going to have a brain blur might as well have a good one.

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In Maine it's about $100.00 to get a Med Card for CBD !!!

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That is truly ridiculous !!

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I'm in Michigan. It was $70.00 for the doc to write the script and somewhere around $60.00 to send the application to the state. now I'm like a kid in a candy store.

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I have a friend who owns and operates a pharmacy for this .It is like being a kid in a candy store lol!!!

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I smoke a little cannabis too, listen to some Dead, makes me feel less anxious. What I really want to get my hands on is some mushrooms. I've had them in the past and when the trip was over I never felt better in my life. I know the medical industry is trying to get psilocybin (sp?) into trails. If they do, I'll be first in line.

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Count me in.

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I haven't thought about shrooms since taking them as a kid. I wonder if it would alleviate pain or have some anticancer benefits? Sign me up for a trial...

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I get that too but it might be the THC.

Seriously though, I find bacopa helps me a lot.

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Order Bacopa for my husband... 😂

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How much Bacopa do you take? Whats is the brand? Thanks.

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Thanks!!

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Hi! What is it used for? Memory loss?

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Yes, it is a great memory enhancer. Lions Mane mushroom also helps with memory and cognitive function. Remarkably, A large number of people are walking around with dehydrated brains. Simply drinking enough water will help significantly as well.

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Just ordered some. 👍👍

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Wow, I never heard of bacopa but I intend to order it from Vitacost. I am 68 and I've been on an ADT vacation for a while. I've been having increasing problems searching for that word I want to use in a sentence. I've also found that when I neglect to take my vit B12 supplement my problems get worse.

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Fortunately my wife is almost as bad as I am and she doesn't have my excuse, so we just laugh at it. We like to joke that it is best if we only go out together because between the two of us we barely have one complete brain now.

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I can relate..

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What brain? Three years of ADT and I just ask my doctor what he thinks about my depleting cognitive status.... he shrugs it off. They don’t want to cop to this side effect.... it’s like, that’s the price We pay to be alive. I lose things about 500 times a day.. usually they’re right in front of me. Its like I’m 95.. at 57..so ol mans disease doesn’t have mercy on our faculties either..aerobic exersize can clear some Cobb webs... this is our new life .. I don’t expect this issue to improve .. one of the barrage that we all deal with on a daily basis.... Hang in there guy! You ain’t alone in this....

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My train of thought spends most of its time off the rails.

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What tracks ?

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This really bothers me. I have decided to do watchful waiting until I get backed over a cliff... "Butch Cassidy & the Sun Dance Kid"style because once we take the jump Big Pharma will kill us off. After watching everyone suffer here I will meet my maker with minor intervention. "Radical Prostatectemy done Oct. 2000. PSA now 0.29. Had a PSA test yesterday ...waiting for fresh numbers.I'm good with this. Rather live happily for now, no pain so I will not sweat this.Good luck & best wishes to all.

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O.k. Butch Cassidy, I’m with ya.. since 2000 , that was a good run from my viewpoint of 3yrs in . Peace of mind to you good sir .. Life is a test ..I’m paying attention to my health like never before I lead a healthy life without any major illnesses before my dx. I feel that if we are lucky enough to live fifty years or more then we all get “Something” with age,; diabetes, heart disease, cancer. So for me it’s the wonderful world ApC . Drs tell me besides the PC you are in great shape ..Sitting in limbo in effect but not glooming and dooming . Dr said I’d be dead by now so I’m

Just happy to be here . If I can continue on a path of no visable signs or PSA I’m eternally grateful for this reprieve from brutal suffering . Fully recognizing the nature of our foe is to return and to eat us for lunch.. I wasn’t a candidate for surgery, wish that I was . It worked well for you . Now time for adt and all of that fun .. read these pages for long and we see that you did better than most after surgery A lot Get RP then soon after, issues because something was missed. Common.. Good luck and stay well!

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Its horrible.

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These senior/ ADT drug moments are one of the prices we pay to stay alive. It has not gotten to the pint where I can't live with it. I don't get upset, it is just my life now- no big deal.

Rich

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Yeh I think its a side effect of treatment. I find that things are not important dont stick in my brain and they basically ‘fly out of the window’

I try to keep a list of priority stuff and then 2nd priority just to help me with this

As long as the important stuff is ok :)

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After all my husband’s memory problem complaints, a new G.P. took him seriously and got him tested. Learn from our mistake and test yourself online instead. Keep what you learn to yourself while you decide which direction to go as what you learn can greatly impact your life. Are you ready to give up driving???

You don’t want a dementia label added to your chart. It changes doctor’s attitudes toward treatment options as well. I saw this when caregiving my mother and, unfortunately, saw it happen a few days after my husband received the dementia label. It was shocking and heartbreaking. The attitudes haven’t improved in the medical field. Memory loss is serious.

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Hi Mjback

Wow that just seems so wrong. Drug companies won't cop to the side effect and Doctors seem to sluff it off on age.

I got the same thing when bruises started showing up on my arms. My Onc said it was age. 6 months later I go to a dermatologist who sees the bruising and asks "Are you on Prednasone?" Seems even our 10mg a day can cause the thinning skin and bruising.

I had attributed my short term memory problems to my age(60). Seems even I don't give me a break.

Peace,

Bees

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Hi Bees, Several men on here have reduced their prednisone to 5 mg without problem. My husband bruises easily, too, but no prednisone for him.

Mary

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I just get on my bike and pedal it clears my thoughts and I enjoy the surroundings. Hmmmmm where did I park that bike again???

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My onco team says that most of their patients experience this. I've found that exercise is key. I go to the gym 5-6 days a week and so far I have very few problems with any side effects. I have fairly normal energy levels, though stamina is down, no ED or as my urologist says "well lucky you" and hot flashes and sweats are minimal. Intellection is fine but oh that short term memory!.... What were we talking about again?

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At least you can sit on a bike. I used to ride every day. Now with pelvic mets bike it collecting cobwebs. I just walk every day

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I too have Mets in the pelvis exactly where I sit on the bike. I went out and bought a cool gel seat cushion to protect my butt.

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Hey leo2634. I too have a gel seat cushion. It's the bump roads that are the issue. If I ride I just stand up on those stretches.

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I try to slow down and regroup, draw a picture in my mind of what it is I’m trying to say or get out. Lucky here mine doesn’t seem to be getting any worse but not much better, rough when I can’t remember the grandkids name Fight the good Fight

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Hi Brent-I'm with you, but only been on ADT and Zytiga for about a year, can no longer calculate a simple tip in a restaurant, I either overpay or underpay. I now have my keys and wallet attached to me as I am so tired of leaving one or the other somewhere. My wife tells me where is she is going the next day and by the time it comes around I have to ask her where she is off to. My doctor shrugs his shoulders when I ask about this.

One thing I have seen here from a number of men is the idea of taking an ADT holiday and recently read about a protocol where you take 6 months off from ADT and instead take hefty testosterone injections so you can at least feel normal for part of the year. I don't know all the details but am sure you can find them here by searching. My PSA is kind of volatile right now so don't think I am eligible, but next time I see my oncologist I plan on enquiring about it.

Best of luck-fight on

Rob

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Me too. Wondering if it is the zytiga, lupron or just the lack of testosterone?

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All of the above. Androgen receptors in your brain need the androgen to fire the neurons. May be beneficial to get on an estrogen supplement. At least you'd get back some cognitive function.

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I believe all three!

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Thank you I will ask.

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Hi Brent, I'll keep this short too!! My name is Lynn, my husband was diagnosed ten years ago. Also been on various ADT drugs, Been on Sytiga, Xtandi, Sam is now on a targated therapy drug Cometriq.

I have noticed his mind is not right, like he's in s fog. He does not remember things, I have to repeat myself constantly. This has just started recently. We are going this Sept12th with a prostrate specialist for a second opinion, I'm going to bring this memory thing up.

Keep us posted...

Best Wishes...Lynn

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I've been on triple ADT for 4+ years now and experience what I call "significant" cognitive issues. Like others, my local onc shrugs it off almost in disbelief, I'd like him to spend a day or two in my body and see how he likes it! Dr. Sartor, the PCa specialist I see a couple times a year is much more sympathetic to it. Prior to his retirement, Snuffy Myers was also very understanding and aware of it. Snuffy seemed to think that Xtandi (which I've been taking for 3 years) was the main culprit.

My current good status has lead my docs to offer IHT if I choose but I am reluctant to change anything that might wake the G9 beast. They also agree that if it works don't mess with it. So the cognitive issues have become the new normal, I try and compensate by focusing on one thing at a time - this can be difficult for someone who spent a career multitasking. And I often laugh at my ADT "buzz", sometimes that's all you can do.

One more cast...

Ed

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Xtandi is able to cross the blood/brain barrier and causes more central nervous system events then Zytiga. It can also cause a brain syndrome called PRES which wasn’t evident on my husband’s more advanced brain scan. Because there was no evidence of PRES his neurologist thought ok to restart Xtandi. His MO had stopped Xtandi after evidence shown of cognitive decline.

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Yes Snuffy explained the blood brain barrier issue during our last phone consult. I will look up PRES. I guess you have to pick your poison.

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I can relate EdBar..

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I agree with what those here are saying. I just came off Lupron and Casodex after 18 months. Finished RT and Brachytherapy a year ago, with a follow-up RT on pelvic lymph nodes 6 months ago. PSA was undectable so I'm on an ADT holiday while monitoring PSA and testo. Still on Avodart for now. I pestered my PCdoc and RO about the brain fog and oppressive fatigue. I was 68 feeling 98. Weight training and cardio helped a lot with the fatigue and improved the brain fog. RO suggested creatine 500mg twice a day. My family doc prescribed Vyvance 10-20 mg daily. That's an ADD med that boosts dopamine. That helped the brain fog somewhat. Those things made the fog more bearable but it's surely the absence of testosterone that causes the problem and we just can't get around that. As most have said here, there are trade offs and no magic bullets. Keep your chins up and best wishes.

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Well said!

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I do so much i forget where we are going sometimes. Memory short term is a mess. I have been on lupron for almost 8 years and Xtandi 4 months which made it way worse. Your not alone.

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Lack of T is probably the reason . I do crosswords every day to try to stay sharp. Sometimes I know the answer but just can’t remember it. Same with names. Terrible. I work out 3x a week and it helps. It also effects my golf game. But trying to focus on my swing is another way to try and stay sharp. But focusing on your swing is not a way to play good golf. Too mechanical. It all sucks but it keeps us alive. I guess we can’t have it all.

Bob

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Wow. My question really did encourage some discussion, didn't it? I had a chat with Mrs. W while we were walking this afternoon. She tells me she can cope with my short term memory loss, being quite accustomed to asking the same question several times. It is my sometimes screwed up logic that she finds difficult. The fact that I cannot see the errors in my thinking are a challenge for her. What can I say? It is not a case of trying harder, I am sure; my brain has been fried. But it is, as ever, reassuring to learn that I am not alone.

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I’m laughing in unison with your plight...lots of us out here going thru the same s###! What a mad -hatters ride..

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I have all of those problems. I have been on ADT (Trelstar) for several years now (RP in 2012) with one failed vacation in the 3rd year. They added Xtandi about 10 months ago, and my dosage was dropped from 4 to 3 to 2 pills a day. The drop helped, but my mind is still a mess. I make more notes about stuff, but of course, I can't find them. I play online games that require thinking and planning and it seems to help keep my mind fairly sharp. My wife sees it the most, the rest of my local family not so much. It is part of the territory we get as APC patients. I remember a post from our host about his travails several years ago about all his mental issues and keeping notes and lists all the time. They help.

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Can’t find my list.. funny if not true.. what a territory we are in. Our wife’s see the true us in the rarest form. But a good beer once in awhile never hurt anybody. The drs know these symptoms well , but what can they say.. Enjoy what we can .....

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wow thank to all who replied I thought I was just going nuts, been on Lupron 2 years, 3 weeks ago tried to open my auto door with TV remote, plus lose multiple items daily and no longer can focus for 18 holes of golf, but still love n play the game 4 to 5 times a week not to forget daily 1 to 1 1/2 hour workout every morning . the old cliche side effects superior to the alternative

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Foooouuurrr! Keep hitting those greens !!

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I have brain fog also but not sure whether it's from the therapy or aging. My wife has it on occasion also. I guess the question is not whether you have it, but can you cope with it? If I stand there looking at the cabinet for a couple of minutes I can pretty much always remember what I wanted to get.

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Hehe he . or how about going out to the garage for something and forgetting on the way what ever I was seeking, yah ,so stand there a minute anD it usually pops in. I’m 57 this is early onset of all geriatric diseases sped up by adt and treatments and no “T”...

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You could post your history in your profile which would preclude the need to post it again. Then simply refer to it.

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Hahahaha.. preclude? Funny..

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My PCP offered me script for ADDERALL (20 mg. Slo-release) and it really perks me up during my waking hours. Clears cobwebs and brain fog, gives you some energy so that you feel like doing something; read about pros and cons on the manufacturers web site. Me, crMPCa, just signed up with MGH, the scans showed several Mets to area nodes/ribs/and where else i forgot. Currently on 3 mos Lupron and nothing else. PSA went from 50 to 24 to 28... I’m going to ask for Zytiga at my next meeting. And for the record my ono sez nothing you eat or drink or smoke will affect PCa in any manner. And also, four diff onos said me taking ADDERALL was okay with them, it will have no effect on my cancer or meds.

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Oncos will prescribe Adderall and Ritalin for ADT brain fog/fatigue and cancer related fatigue, another weapon to help counter some of the side effects.

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I had a friend that had a script for adderol. Said it helped his add. I tried one and thought the world as spinning. Was not for me. I say people use whatever works for them .. glad it helps you. oncologist do believe in their own ways entirely . Not much training in nutrition. A bone of contention. You either believe in natural remidies to help or not. I believe that everything that we eat ,drink,smoke ,think and feel effects pc and our ability to prolong our stay here. I don’t buy into everything my western doctors tell me. Wish you well.

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Diet is vital! Snuffy Myers will tell you that high omega 6 fats are like rocket fuel for PC cells. Replace vegetable oil foods with fruit oil. This includes replacing corn-fed dairy and meat with grass-fed - so i got rid of my smoker) and mostly now eat poultry or fish. I replaced corn oil (and all others including canola oil) with olive oil and dropped 90 lbs. Now all my numbers (BP, cholesterol, heart, etc.) are perfect which i think is why im still here after 22 years of PC. I recommend his cookbooks.

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Agree 100%.. who can argue with your success? Great job thriving! Thanks for the tips . The smart will

take note..

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Any ADD or ADHD med will likely help with brain fog, motivation and staying focussed. Maybe memory too. You have to fight against the feeling that you just don't have the energy to do even minimal activities, including mental ones. I'm not alone in my experience of being able to do more than I feel like I can do at low points. Just get moving and do the tasks, the workouts etc etc. I work out 6 days a week, as hard as I can stand it; usually only 20 minutes or so. I bike nearly every day for as long as I can stand that, usually an hour or less. I was never an athletic person, but I can tell you these strategies do work. Sitting and stewing about having no mental or physical energy just takes you down lower.

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I drive myself to continue with my research. The excitement that comes from making new discoveries is a great help for me.

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No stewing!

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Until last November I lived in the Caribbean, and joked with myself that "West Indies" is an anagram for "Stew Inside". I made (and make) every effort not to.

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Caribe time has a slowed pace .. must have been nice, except for hurricanes..

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Could not function without the adhd Med. I almost feel normal maybe better than before diagnosed. I have had major fatigue for a couple years. Maybe the PC. My family Dr. had no answer. Anyway it helps

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Can I ask what you take ? One doctor had me on Vyvanse but it made me agitated , paranoid , and other bad sides. And I typically have few side effects from anything . Someone suggested I switch to adderol . Thoughts ?

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Ridalin and I have no side effects. I can sometimes not take the one in the morning if I am busy but the one in the afternoon is needed to function like I’m used to doing. Still working. Give it a try.

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5mg

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Thanks Carlo !!!! I like the idea of getting away from the once a day time release too . I need to get an appointment. They are hard to get !!! Thanks!

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Do it in a email. Much easier

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What dose of Vyvanse were you taking?

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Just 10 MG a day .....

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I have some features of ADD, so 10-20 mg is about right. On bad energy/mental days as I recover from ADT, 20mg is OK. If I were to take 20mg on good days, that could me jittery, teeth clenchy, and likely have difficulty falling asleep. I do feel the 10mg dose somewhat, but it's really a help in getting going, and staying motivated and focussed. It's not for everyone, and some people are more sensitive to its effects than others. It is not considered by docs to be an amphetamine type of drug, although its molecular structure has similar aspects, and I can vouch for its mild-ish stimulation fx.

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I have found myself forgetting what I was going to do from one room to the next. I stop and I try to remember what it was that I was either going to do or what I was going to get.All I do is try to step back take a deep breath and go from there. Not sure if it will ever get any better or worse it's just another annoying thing to deal with( six treatments of Taxotere along with Lupron and Casodex) Good luck and Gods speed Sir.

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Yes

Extreme short term memory problems.

On Zytiga almost a year.

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What did you post? I can't remember what it was...

Good Luck and Good Health.

j-o-h-n Sunday 08/26/2018 7:00 PM ED

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Limerick Ode To “I Forgot Day”

By Madeleine Begun Kane

I nearly forgot “I Forgot Day.”

How ’bout naming it “Memory Rot Day?”

Since my brain is a sieve,

I find each day I live

A confounding “Forgetting A Lot Day.”

Good Luck and Good Health.

j-o-h-n Sunday 08/26/2018 8:32 PM ED

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I have had problems with brain for since I startedLupron 4 years ago. Seems to get worse when I am feeling stressed. I have found acupucture has helped some.

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I agree, stress makes everything worse.

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Yes Brent & all here that have replied to this brain fog problem. I was on casodex 5 months & only i shot of luprin & finished with it all recently for serious reasons.

Here to hold a firearms licence you can not say you have brain fog,you are a very responsible person therefore that does not have( brain fog).

When the mo asked what side effects i had the brain fog was mentioned & it seemed to amuse these people.

I tried to order that bacopa & it was more to send it here than the product so will look local but taking L-Arginine helped me & breathing exercises to the brain foged demented part of me.

Keep on keeping on Friends.

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I've heard that Lupron is worse than Degarelix for this - has anyone heard so? Hubby was DXed June 1st and started with Degaralix injection, then was switched to Lupron, and at that point he started having memory issues. Something about how these two work - that Lupron blocks T production via the brain, whereas Degaralix blocks T production at the source? If anyone knows more about this or has a link, please advise. Trying to get the MO to switch him back to Degaralix and she's not being overly receptive.

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