Hey warriors! So how do you know if you have brain fog or the beginning of dementia? Is it possible to blame ADT and Zytiga? My husband has been on Ellegaard for five years and Zytiga for 2 1/2. Years, he seems to have a lot of memory issues lately, and I fear it’s only getting worse
Any thoughts or experiences on this? Would a vacation from all this help? He is considering getting off both. TY
i am also interested to hear other peoples experience with this. My husband had memory issues prior to treatment but is definitely worse now.
instead of a vacation which is very dangerous get your E2 (estrodiol) checked. Without testosterone your E2 will eventually go into single digits which will interfere with bone, ligament, mental health. Tell your doctor that you are seriously thinking of stopping adt but because of mental health issues but would like to try low dose estrogen patch.
He might say it is toxic to the liver which is only true for estrogen pills. You ate talking about a dermal patch which bypasses the liver.
First before and during e2 measure your E2. You it around 20 pg/ml
I started to have memory issues. MO suggested word and math puzzles to keep sharp. Seems to have helped me, only occaisionally do memory issues pop up
I started using solitaire on my phone.. the endless doctor's waiting room, solitaire. Waiting for the nuclear stuff to circulate and be absorbed, solitaire, just sitting watching some boring TV, solitaire. I've gotten pretty good at it after thousands of games and it does seem to help with mental acuity.
You didn't mention his age... it's not abnormal to have some memory issues as one approaches a significant age (I'm nearing 80..) but keeping the brain active seems to help in keeping it healthy.
Do jigsaw puzzles help too? There are web sites that serve up puzzles. They tend to be easier than physical puzzles since all pieces already have correct vertical alignment to start.
I would think puzzles do. It requires brain usage I do brain teasers too. They drive me crazy and I will lay awake thinking about them
There are psychographic tests he can take.
Any pointers to such tests? Does a therapist have to be involved or can they be taken online?
A psychometrician.
Sorry to waste your valuable time. Are you suggesting a stay at the Bates Motel?
Yep........ the Master is always hanging out at His Front Desk.............
Good Luck, Good Health and Good Humor.
j-o-h-n
I am followed by a geriatric doctor who tests me every 6 months.
Slight changes witch are normal as we are aging.
I am 77 y.o. and was on Eligard 45.0mg/24weeks and Lupron Depot 22.5mg/12weeks X 2 in 2020/04/04 to 2020/08/24.
Now PSA = 0.01μg/L (2024/02/09) and
Testosterone = 1.6 nmol/L - 46.10944ng/dl (2024/02/09)
Psychographics is another name for the analysis of consumer lifestyles. 🤔
so …… I was having issues like this , so I bought one of those pocket dictating devices and when I had a thought I wanted to act upon later I dictated it into the machine. Trouble was later I couldn’t remember to Check the machine …. then I couldn’t remember where I put it. When I found it ( usually a couple days later ) I tried to check the machine but couldn’t remember how the controls worked. Then I’d get out the manual to remember how to use the machine and discover I lost the machine again while looking for the book. Eventually I’d find the machine and have to look up the controls again but lost the book. Frustrating but over a couple days I’d finally remember to keep the book and machine in the same place.
Now I’d play the first note ( after wrangling with the controls ) and eventually hear the first note . Then I found that I forgot why I wanted to save that note to begin with .
Soooooo .. next I’d ………uh …….. er …. , wait a minute I have to read this post again !!!!
Just shows to go ya …. Your husband isn’t the only one ….😂😂😂😂
I think you can add stand up comic to your repatore rotflol.
On a serious note not only do I forget things I screw up tasks which has a element of forgetting in it.
Put coffee beans in the pour over filter without grinding them was todays so far.
And I do these things at a very very slow pace. Its not like I'm being rushed or something.
I hear you brother …. Same here. Plus I’m on opiates and having been on them sufficiently long, I get the opiates “ nods “ when they wear off. It’s a heavy desire to sleep and loss of attentive abilities. Sleeping does little to fix it , I just have to include my opiate meds in my pill dispenser, to fix it. The memory loss and dullness opiate SE ( when they wear off ) are a stressful combo. Dunno if you use them, but that can impact things too. If I take them timely , I don’t get the nods. . Sometimes I just don’t want them, but now it’s way past things that simple.
Hey , but you know what buddy, we’re both “ still here “ we might have to endure / fight off a med induced glitch here and there but “ we are still here “. I wouldn’t change a thing. Some guys here just don’t want this in their lives, some even go into hospice to get rid of these issues, and I can understand why. Still, for me, I’ll take more time on the planet with my wife and enjoying my QOL list. These issues are minuscule by comparison to staying alive IMHO.
Love ya buddy
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Kliber, We will take time with you too.
So having said that in an attempt to lighten things up a bit.
I’ve been on ADT for 65 months ( Lupron Xtandi ) and I have issues with kinda immediate memory loss. Moments after doing something, I can’t remember specific details about it immediately , but later , a short while, I do most mostly remember those lost details. Sometimes the thing I wanted to remember yesterday ( but lost it back then ) will pop into my mind the next day. Those are my symptoms, generally, plus feeling dull and inattentive.
I’ve had a recent brain scan and it shows mild “ ischemic small vessel, white matter, brain damage “ that my medical crew definitely thinks is damage as a result of Xtandi crossing my blood brain barrier to my brain. Mine is able to be seen on a brain scan as a determining factor.
Just my IMHO, losing a little memory is preferable to losing weeks or months of life a vacation might cause. Those are just my preferences, you probably will vary. I treasure longevity above all else.
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Oooops … forgot to finish. Naturally it will take your medical team to determine the actual nature of your memory loss, but if it’s determined to be ADT induced, ….my wife and I , almost every day after breakfast / morning pills …. we play card games like ONO, and casino quality 3 card poker. For me / both of us …..we play and it helps both of us, especially me , to keep our alertness up, and minds sharp. I find it very beneficial to spend time every day doing things that take alertness and mind acuity. I know I won’t fix the damage but it feels like I’m fighting loss / faster loss by using - challenging my mind rather sitting around vegetating. I feel more aware and alert doing this. Hope this helps you.
Well yea you're onto something. I do have mitigating factors if that's a good term for it.
Hydrocodone and cannabis for example.
On the positive side though of somewhat keeping sharp instead of cards my at home business keeps me a bit active. Luckily the business has been fading at about the same rate as me so it has turned out to be just the right amount of effort involved, no stress, etc.
I'm with ya on the "still here". My wife (love her to death) still says about every day she is just happy I am here. Doesnt need much else. It's the way she says it. I guess one would have to hear her to get the full effect.
I was concerned of your white ischemia but it's been a couple years now?
Maybe it has plateaued ?
My cannabis works for me. An occasional garnish of psilocybin tops off the mood lifter. Orgovyx sure racks your body, bit I am seriously studying my piano arrangements to give my poor ole mind a workout. I play the preludes at church on Sundays to show all how bad I really am.
Im daydreaming of some garnish falling in my lap lol.
I was just rereading some of this …seems like at least one of my replies is plain gone ( mods ? , did I hit the “X” instead of the “ reply “ or ? ) I know that sometimes I get too exuberant with my answers or trigger the “ kill “ button on the mods board 😂😂😂. Plus , and I know everyone does this ( don’t they .. gulp ! ) …. jump in and answer a comment without paying attention to the header ( where it’s going ) and my comment gets under the wrong post. Heck !!!! …… half the time I’m lucky I can type coherently at all at the time ( I’m being generous lol ).
Anyway , here goes again buddy ….. lol , fersure marijuana is historically famous for its ability to erase memory and be incoherent lol ….. that’s one of the good things about using it.
I gotta give you the bonus points for still being “ with it “ enough to still be doing business anywhere ..esp at home. I wake up most mornings looking like a wino that has been on a 3 day drunk ( and I rarely drink at all anymore ) … usually needing an hour or two to get to normal awareness / alertness … lol. I dunno how you can do it, amazing. ADT + drugs hammers me. The hammer is happy every day if my insurance is still in effect , is that the same thing ……hummm, dunno.😂😂😂😂. Just kidding ( not ) . lol.
Mannnnn … this thread has really taken off and hit a popular topic. Keeper70 hit the “ popular “ button and stimulated a hefty camaraderie among everyone . It’s an impressive accomplishment to his post. Kudos to Keeper70 .
Alright buddy, it’s getting late , nearly midnight … the hammer is going to make me go nitty nite .. have a good one big guy.
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No worries. I run into the same thing with my replies missing or what I find hilarious when the person I replied to deletes their comment. Looks like I'm talking to the wall.
When I used the word work I used the wrong word lol. The last thing that should happen is to be praised for so called work ha, ha.
For about 6 months or so I don't get up till 11 a.m. or as late as 1:30. Luckily the so called work has been fading away at about the same rate as me lol. So easy to keep up with. Im the boss so no pressure. No stress.
The other day I had a actual large order of heavy stuff and what would have taken me 5 or so hours before took me a little under 3 days.
pics: remove from cardboard, remove from crate and inspect, add gear, close up crate make labels and invoices and haul to UPS. They have carts to load onto. TG.
Well hey that answers that. I've thought about asking you if you do voice to text. Your writing always sounds so conversational and expressive. But you are typing as I do.
The brain fog post by Keeper really has drawn us all to it like a magnet lol.
Well, I’m guilty of erasing my posts sometimes , especially if the original poster goes off about his post being hijacked. Completely missing all the great camaraderie he’s generated with his post. This post being the perfect example of pulling a lot of guys out to share their mental despair due to treatment. It’s a great service , imho, to be able to get a lot of guys to chime in and share and ….. still some grouchy guys ( not saying grouchy is a bad thing ) take offense.
I do use , or try to, use voice to text now and then but my sometimes heavy slurring causes the voice recognition to misinterpret to the point that typing was better to begin with. 😂😂😂 the slurring another SE of ADT.
I suspect that the work you put in does help you keep yourself alert and mind sharper than those that don’t.
Once again, you are right about brain fog being a popular topic. On the one hand, it’s a no brainer…so obvious……. But I forgot to think of it like that.😂😂😂😂
Love you buddy
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I delete some of my replies sometimes. Actually must be a software problem here lately. Speaking of I was trying to delete yesterday and today and the "more button" isn't working. Anyway lol.
Yea the camaraderie and sharing even the most peculiar things going on in our PC life and the knowing our mortality all shared softens the personal blow to one's self this curse brought on us. (curse brought on us is new expression for me lol).
What a day. I had to leave the house at 9:15 a.m. for dental appt. (looks like no jaw necrosis but as I knew a host of other dental issues, fractured, cracked, missing, gum disease) so that meant getting up at 7 a.m. to get the body and mind going well enough to be presentable and cognizant to the outside world lol.
Then stopped by my son's for mason jar full of green, talked, hugged grand kids and headed home. My son helps me live like Scott described: a teenager living at home lol. Really was the right thing to move here from Chicago to be closer to him and kiddo's. And like dumb luck stumbled into having a great Oncologist. My son and I the other day were saying in the end we won't be saying wish we would have had a different Dr. Very lucky I say.
Love ya too brother
Hmmm. Now another program's not working on my end. The emoji button.
I’m grateful to all fellow warriors who responded to my post! Lots of thoughtful discussions and humor. I sure value y”all for responding, I know everyone has a different response to these nasty drugs, so thanks to all for all recommendations and advise! Best of luck to all
Btw. I’m the wife (aka Keeper70) 😆
At age 74, and this started a few years ago, I find myself flitting hither and yon. If I remember I have to do something, I drop what I am doing to go do it ... before I forget. I am not on ADT or opiates. I have a system for remembering if I fed the dog her two meals. I leave the scoop this way after her morning feeding and that way after her evening feeding. I hope these memory problems aren't more serious than just aging. And yes there are times when I can't find that word I am wanting to use.
If you are giving your dog chocolate chip ice cream, remember, it's two scoops.
Ha. No choc chip ice cream for Buffy but vanilla is OK. She loves to watch TV. Her favorite channel is Animal Planet. Her favorite show is AFV.
You don’t sound unusual considering our ages. That’s why those memory pills on TV are selling by the millions of dollars . I also use a number of memory cues like you scoop. I think anyone can benefit from those. I started to notice it more after I started using more cannabis as well. 😂😂😂
exactly what i was thinking...btw what was the question?😳
😂😂😂
LOL. I just got a 48 hr. notice from PG&E.
our last pg&e bill was over $700 , almost 40% more than the month before with no changes here. The people on the Nextdoor app are freaking out. PG&E says bills going up another 34% next cycle.
Get the Nextdoor app and read some of the assistance possibilities mentioned there.
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I too have short-term memory loss since starting ADT. Occasionally, I also have some almost debilitating confusion. These issues have improved since switching from Lupron/Eligard to Firmagon, but they resurface if I am stressed or over tired.
Frustrating at times, but not debilitating - at least for now. I've talked with my family members and close friends about my situation, and they have been encouraging and supportive. Sometimes I will get caught up in an anxiety loop over the capabilities I've lost while on ADT, but most of the time I can be content with the new me and accept my limitations.
I try to head the fog off by exercising (the best remedy), playing challenging games, and by volunteering. Some mornings I'm really foggy until about 10. On those days I try to stay close to home and give myself permission to be wrong, or need additional rest.
As for quitting the meds, I thought early on about getting an orchiectomy, but I didn't want to jeopardize my love life, so for now I choose to stay on the treatment. That being said, I've thought about quitting firmagon and zytiga many, many times. The decision is a personal one, but for me just quitting would mean a much shorter, and likely pain filled, life. For me, diminished capabilities are worth it if I can spend more time with my wife, family and friends. Plus more opportunities to enjoy all of nature's marvelous miracles.
Best to you and your hubs
Wow … we wrote near mirror posts on wanting to still be here , both at the same time. Just goes to show you great minds think alike lol. Campsoups too.
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I feel like someone is wearing an oculus and flying my brain. Is that you or Camps?
Me on the left …. Camps on the right … the group is the scenery. lol
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I feel your angst , deeply buddy. It seems like it’s not enough to just get old with all the mental issues that can bring a lot of men, but add in all the gritty reality of our looming death sentence hanging over our heads waiting to claim us any minute … top it off with being mentally damaged by powerful life altering ADT and treatment drugs ……. we suffer and endure to just spend a little bit more time on this earth with our loved ones / families …. Man this would rock any person’s world…. I know it rocks ours.
I love the way you put “ that being said, I've thought about quitting firmagon and zytiga many, many times. The decision is a personal one, but for me just quitting would mean a much shorter, and likely pain filled, life. “ heavy ….. and brutally true for us and so many guys here. Plus how much “ family “ time would we really give up …. Likely months and months , even years we’d sacrifice. There is nothing good about having our lives taken by cancer , not for us …not for our surviving loved ones. Like you , I’ve thought about giving up to hospice, more so in recent times than before. Sometimes I have to ask myself how much longer can I endure these ever increasing difficulties to stubbornly persist. Then I think about my wife and / or see another beautiful sunrise and the question answers itself. You and I think very much alike there buddy …. Like minded brothers fighting together, and with all our other brothers here .
Hummmmm ….. does this seem gloomy chit or what. lol Kripes …
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Kal, I love it when we can be real about our situations. Sometimes this treatment is a real prick (I think, not sure I remember what a real one feels like).
The cool thing is that we get back up, we focus on some QOL, we wipe ourselves off, and we have another day of promise.
A band of comrades that I'm proud to stand side by side with.
I've had a most up and down year the past year or more.
The down sometimes very down lol.
Never thought about hospice but sure started to seriously see the reasons for going. That lasted about a month and a half. Otherwise I lucky to be surprised sometimes when I either realize another attribute I've lost has occurred unnoticed or realize "hey I haven't needed that crutch in awhile " (realized its been about 3 months since I have needed the "chair" thing in the shower).
Yours is quite the battle brother Kal. Good for all of us that you've hung around man. Your family Im sure too.
Im hangin around too. As Scott once said I feel like a teenager living at home. I don't mind running into walls and mumbling as long as I'm here still with my wife and family, friends. They feel the same too lol.
Camps, I agree with you man. When I thought I was having a mental breakdown after two years of Lupron, and I still had to ride out the 4-month dose, I thought very seriously about giving up. Fortunately, the ones who love me supported me and showed me a lot of grace. That helped me keep in mind that this too shall pass, and helped me focus on riding out the reaction.
That, helped, but also knowing about what so many of you have experienced and overcome. I take a lot of strength from this group.
Gloomy, hell. For me, the curtain between this world and the spiritual world ahead is becoming more transparent every day. I am intrigued to see through, actually.
Will I see God or the Great Spirit? Will I fall into the Greek River Styx or enter the majestic hall of Valhalla? Forget the 72 virgins, I have forgotten what you do with them.
I am not afraid of the end but will delay it absolutely as long as possible. My only concern is the path to get there.
Crazy post, I know.
Ryte on my brother … absolutely the right attitude …imho. Spot on.
Btw… “ worked the world “ reminds me of hamradio expressions like WAS worked all states, dxcc ..worked all continents, or Dxcc, long distance century club. Does worked the world happen to refer to ham radio ?
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My cousin had a world-wide ham radio setup in Thornton, a northern suburb of Denver. I only worked in grubby oil and gas on the five continents of the world. He met more intriguing people than I did.
The future is interesting to me and I try to shed emotions about it. I deal with each day that follows the rising sun I see over the eastern horizon. I am profoundly for everyone and make the vest best of it possible.
Kewl thanks for the info. I got my ( still current) ham radio license back in 1959 and “ worked the world “ using Morse code. Morse , after sufficient experience, becomes a 2nd language. Mucho appreciate it.
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You mentioned anxiety loop. I get anxiety if even the smallest thing gets added to my plate like change the order I was ready to call in to the restaurant. Just something simple. If I don't have a chance to slowly in my brain vet out, go over in my head what the steps involved in something and approve or disapprove what it is I have to do I practically have a panic attack.
You've had some real tough times since your dx with SE's and personal. Hope you have some smoother sailing from here on.
Thanks Camps. Things are slowly getting better over the last month
Fully get what you’re saying. Occasionally I’ve been driving and if there’s any changes to the route or destination I pull over and recalibrate. Otherwise I get so distracted that I make poor driving decisions
Not as bad as one fellow who had to program his route into his GPS to follow each step.
and b4 apc i thought anxiety was a cop out for weak people.....now superman has a valium rx....
lol anxiety can ruin your day ( week -months ), a lot of people don’t appreciate how ugly it can be. Seriously so. Thank the heavens that we can get a simple pill that takes that awful experience off our minds for a while. Nothing weak about facing your mortality and getting twisted up about it brother. Nothing whatsoever.
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Squash and broccoli give me a panic attack. And serious diarrhea.
Funny.
I developed cyclical vomiting syndrome this past year. Yea I can add being told what I am going to eat causing a panic attack lol.
Cyclical vomiting syndrome sounds way worse than the shits. I remember food poisoning, or whatever it was, sitting on the toilet, throwing up in a paper bag at the same time, and saying, "Take me now Lord, please take me now."
Not too bad. No sitting on the toilet. Just need a throw up bucket next to the bed. In the car. Next to the couch. I collected a bunch of those hospital throw up bags and keep a couple in my coat pocket.
Only problem is I ended up in the hospital with starvation and adrenal crises and I lost 50 extra pounds. That put me into my pre-diagnosis weight but I lost what little muscle I had left. My arms and legs are that wrinkly, crepe skin like a 90 year old. Or a cancer patient lol.
My wife tells me to fix my pants. Sorry dear that's how it is. There is nothing left of my ass lol.
It was hitting me every 5 to 7 days with 30 hours of vomiting/dry heaves every 45 minutes to an hour but has gotten a bit better on its own. Now hit more by surprise than in a cycle. Not much in the way of treatment.
Surprise vomiting is bad. So is surprise shitting.
Sounds awful Soups. I've heard of spin yoga and it sounded grueling, but spin puking is torture. Check your food for Ipecac, Exlax and your drinks for Miralax. Somebody is out to get you.
lol … a giant head of broccoli chasing you down the hall to the bathroom comes to mind. Ewwwwwww…. Now where is that béarnaise sauce ?
Yikes 😂😂👍
Medical term for that condition is called: VeggieRhea.....
Good Luck, Good Health and Good Humor.
j-o-h-n
I get my veggies in a Bloody Mary and my h2o in ice cubes. A New York Strip Steak, once in a while, but the teasers are pretty pricey.
my personal experience is that i had severe brain fog when i started on permanent ADT. i had had it before together with radiation (IMRT and Brachy) but at that tie there was no noticeable brain issue. a few months after starting full time ADT my brain got so bad i was think seriously of suicide. it was just no fun to be alive anymore. fortunately i did not kill myself and got over the brain fog. no idea why. i did have an orchiectomy to replace the ADT so maybe that is it. now my brain seems almost as sharp as ever considering my age. i never had a great memory preferring to figure things out anew rather than remember them.
i now have better memory of my daily plans that i make when going to sleep. i wake up and immediately remember what i planned to do. of course so many things have changes including severe insomnia cause by urinary frequency pain and other things that who know what is causing what. but my mind seems as clear as it has ever been (minor adjustments for age) i can still write computer programs (AI helps me) i can even get stoned and still function, something i had problems with in the past.
so if you are experiencing brain fog, don't just accept it, keep your brain active, get plenty of (more) exercise and improve your diet. testosterone is a very useful hormone but you can live without it.
See the posts by j-o-h-n, especially on Facebook. His motto is, "Never give up. Never, never, never."
j-oh-n's motto is, "I will tell groaners. Forever, forever and forever."
That one is tatt on my forearm.... thanks anyway.
Good Luck, Good Health and Good Humor.
j-o-h-n
Ah geez, thanks for your post, I just couldn't remember my motto........
Good Luck, Good Health and Good Humor.
j-o-h-n
I was close as well. It was doubly frustrating that my onco poo pooed my mental challenges until I wrote him a letter documenting what I was going through on a daily basis. I was determined that if I couldn't get anyone to change me off of Lupron that i would end treatment, and go the "death with dignity" route. I went so far as to get my primary care dr. to agree to sign the necessary forms.
Fortunately, I was able to ride out the 4 months and the mental SE's on Firmagon are much less severe. Once again enjoyin life.
I/we or most of us kinda knew this but you just spelled it out in more detail. What an ordeal. A letter to the doctor etc. Your primary doc agreeing to the forms. Whe Well glad to have you around.
I , among MANY others here are glad you are still with us brother. Hanging in there provides you the time / opportunity to find more QOL experiences… with your loved ones if you want. I’m sorry you had to endure that mess big guy.
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Thanks K
Sounds like a lot of us have been through the same, or worse. All we can do is try to stay positive and try to support the next guy up. My mental state was f'd up, but I haven't had to be strong under the pain that you and many others endure regularly. You're the ones that inspire me.
Love ya bruddah
Well I’ve had my glutes kicked by this for sure …. But seriously there seems to be so many more guys facing much worse problems than me . There are so many it’s just a tragedy . Might sound funny, but after you’ve been kicked in head long enough or have had to endure “ any “ thing like this long enough, it becomes oddly normalized and you just kinda ignore it / don’t think about it that much. It becomes your every day normal and you can shine it on pretty easily. Not saying it doesn’t hurt but you give it less power in your life and it’s easier.
Having said that …. Our minds are the key to any of this , our minds are the engines that allow any of us to deal with anything and everything. When we start having troubles with our engines , the whole rest starts to crumble and take over. IMHO, a guy like you that faces engine problems and makes their motor purr again ….well you’re the one that has handled the fundamental destroyer and come back stronger, stronger and with the knowledge and confidence that you are able to come out on top commanding your own ship. That challenge doesn’t get any more fundamental and difficult, yet here you are …still kicking sand in the face of this adversity. “ you “ brother have faced the even bigger adversity and bested that. Every croaker here can admire that buddy. I said that.
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You, sir, are too generous by a league
Despite brother kal leaving me speechless in my attempt to respond, thank, give appreciation to what he wrote I can at least come up with as far as what he wrote about you:
"You deserve it". "Ya done good young man".
And to you I would reply, the same things I said to Kal apply to you.
Thanks also for the young man comment. Pure hyperbole, but I love it nonetheless
Interesting!!!! I am also experiencing an increase in very short term memory - mostly when juggling between norwegian and english when a word in the "other" language fills my head and it takes me some time to recall the one I am searching for. Looks like this is not old age - but more an aspect of treatment. Thanks for posting this
Kind of the same here. I worked two years in Venezuela more or less as a native. I learned Spanish in the bars and the streets (calles). Back in the united States, it took at least six months to work in English again. I can still dream in Spanish, mix up the words in Spanglish until nobody can understand me. Maybe we are blaming our treatments for something which is baked into our psyches.
Hi, not sure if it will help but I treat memory loss similar to hot flushes. With hot flushes I enjoyed turning heating down and saving money. With memory loss I enjoy not being able to remember anything bad from my past. I still remember lots of good things. My wife always reminds me to take my tablets so that is not a problem and I don't do any cooking so nothing dangerous - I make cups of tea and sort cereal for breakfast. I really feel sorry for anyone coping on their own. My wife thinks I'm very selfish planning to die before her :). We do a lot of jigsaws and watch detective dramas on TV - working out between us who is who is often a puzzle. I also like to get out for a short stroll each day about 30 minutes to shop and back for a loaf or something. Nice to see what has changed from previous day even if only a different parked car. Everything seems to help with memory, except I never worry if I can't remember what I was planning to do a few minutes ago. I just ignore and think if it was important I will remember again in a bit and if not, it doesn't matter. This philosophy goes back to doing maths at school. I used to watch others struggling to learn maths formulas and I always said it was a waste of time. If you need to remember something you will come across it so often you can't forget it and if you don't remember something it can't have been that important. I am not meaning to trivialise dementia but only a bit of memory loss. There is a big difference when people can't recognise who they are talking to and set fire to their kitchen etc. I am now on palliative chemotherapy. Still plenty of time to go hopefully but definitely not years. The stage anyone is at in this journey will affect their concerns. The doctors do their best to guide us and discussing specific concerns with them gets the best response. Speak plainly to them and listen to their answers. If you find they get too technical just ask if they can explain simpler. Remember there is no such thing as a silly question only a silly answer. If you can't understand (as opposed to not wanting to hear) the answer then it is silly, so ask again. Not sure this rambling will have helped you but good luck and best wishes
Great post brother , thanks for sharing. I like your attitude as well.
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Doctors are primarily physicians but not necessarily spiritual guiders. One may look elsewhere for the metaphysical aspects of learning.
well. Going on 7 1/2 years now, Taxotere (chemo) then Xtandi and eligard and e Xgeva shots. Brain fog was severe at first. I could see the words but they just wouldn’t come out. This has gotten better over time, still have occasional issues but don’t know if that’s the meds or just getting older (73 ). Wish I could tell you which med did this but I don’t have the answer. But it’s very real and uncomfortable in a crowd. Hang in the warrior, I e worked Tru it and I still here. No vacations taken,the fear of the cancer gettin g worse . Just saying.
Right on brother. ❤️❤️❤️
great question and interested in the replies. I wonder the same thing. To a certain extent, it doesn’t matter much for because I’m unlikely to be around for significant dementia, if that’s what it is. I try to make light of it, acknowledge it to people when I’m talking to them and write a note. Mind you the list is quite long now. Still get caught out by going to do something and then forgetting what it was. Trying to be gentle on myself about it and accept the frustration.
My memory bank is my phone. I regularly record notes to myself, or send myself a message to help me remember. Glad for a smart phone or else I would be walking around covered in post-its.
this is what young people do all the time. they will probably never have memory issues unless their battery dies. they also use their phones to magnify small type on labels etc. i try to remember to do this but usually forget 
My partner was on ADT for a short time, and by month 3 it was noticeable. At month 4 and onwards it became severe. At month 6, a few months ago, he stopped ADT.
Now he says he is feeling "sharper". I've certainly noticed it
"So how do you know if you have brain fog or the beginning of dementia? Is it possible to blame ADT and Zytiga?"
I think ADT, or at least Lupron, can cause both, and they are different. I have been on Orgovyx for 3 months and Abiraterone for 1 month. I began to notice brain fog after 2 months, like scattered thinking and less ability to do several things at the same time.
Five years ago, before my cancer, a younger brother completed 3 shots of Lupron, his wife says, and within a year began a slow cognitive loss. She does not have a computer, but for some reason, a couple of years ago, she told me that she blamed the shots it. So I googled and found:
pennmedicine.org/news/news-...
pubmed.ncbi.nlm.nih.gov/328...
Now can he barely converse, can't write, and needs her help to carry out daily living. He's physically in good shape, but she can't cope with the dementia much longer. As for the cancer, IMRT and Lupron apparently cured him.
So I think brain fog is common, happens immediately, is not cognitive loss, and is recoverable. While dementia is rare, happens much later, is progressive and not reversible.
Thanks for your post as my memory lapse moments are getting worse. I'm 58 and running a family business. It gets embarrassing when talking to customers and you have a 30 second brain lapse and can't remember simple things. I also have trouble when I'm driving and don't know where I'm at or where I'm heading. My mother had early onset vascular dementia which got worse only in her 80's. I've had trouble sleeping for 20 years but last year discovered THC gummies which have taken me from sleeping 3-4 hours/night to now getting 6-8 hours every night. This made a dramatic improvement in my memory but it seems to have gotten worse again as I started back on Zytiga. I've been taking Orgovyx for 1.5 years. Started Zytiga 3 months after starting Orgovyx. I had to take a few months break from Zytiga as I'm also dealing with a separate nerve damage disease, Parsonage Turner Syndrom, and I had a bad outbreak over Christmas. So 3 weeks ago I went back on both and memory lapses are coming frequently. I hope to be off ADT in August as mine is adjuvant after prosectomy & radiation. My physical exercise has been limited to short walks due to nerve pain. What's causing my memory lapses early onset dimentia, Orgovyx, Zytiga, nerve medications, THC? Hopefully I will get off all of these in the next year and will see improvement.
Thanks for your post to give me hope it will improve and I'm not alone.
Yeah, THC gummies. A leg or two off a rabbit works for me.
i am not sure thc would help me sleep smoked some strong stuff shortly before bed last night and still got up every hour to pee and worry about things. but i did do some decent engineering in bed early this AM
S,
I've always slept well, until the last 4-5 months. I'm shocked at what my brain is doing when I wake up in the night. Where does my brain get all of those awful images, and wild worries?
I mentioned this problem to my counselor, and she suggested that i keep a comforting object on my night stand, and that I reach for it when I wake up so that my brain is given something else to focus on. I was skeptical, but I tried her idea and it works for me.
are you taking any sleep medication like Serequel? I had amazing (not fun) dreams
No, I’m not taking any sleep aids besides a piece of a gummy before bed to make me drowsy.
My waking and negative thoughts stem from a sudden death in the family. It’s been a traumatic time. Fingers crossed that my sleep will return to normal soon as I work my way through grief.
I know since I started ADT, I have the brain fog but interestingly enough I have what my wife and I call the “opposites.” In telling a story or giving directions I’ll say exactly opposite of what I’m thinking. For example, if I want to say it’s too cold, I’ll say hot, or turn left when I mean right, up instead of down. We laugh about it but it confuses people they don’t know me.
Glad I don't have "opposites". I have "first plan rules". If I plan to do something one way, and then later have a better idea, I can start out following the second plan, but if I am not paying attention I will end up following the first plan. Frustrating, but I've learned to accept that its going to happen sometimes.
I really appreciate all these informative experiences - I am in month 7 of Lupron/abi and I do notice short term difficulties and sometimes just lying in bed a thought process falls apart, and at times I cant remember a word or name. I do exercise heavily and still run a business both of which I think helps mentally, plus I have taken Gingko Biloboa (60mg) for years as I know it helps my sharpness, but I may try doubling my dose.
Ive posted about this myself. Erleada. I do puzzles everyday. Crosswords and Sodukos. Im definitely getting worse and I should be getting better. 23 months in and 1 month to go. By July I should know if this starts to clear post ADT!!! Ill be back!!!
Does anyone have any experience or knowledge as to whether or not caffeine helps with the dreaded ADT Brain Fog issue?
whenever I have a health issue I always Google the issue and curcumin. I suggest you do the same. I take 2800 mg daily and no brain fog.
Its been 4 years with Erleada and Lupron and there has definitely been memory issues, especially with peoples names and getting a train of thought interrupted, but I'm 69 and my full time job seems to be going well and day to day minutaie seems to be fine, and I'm just accepting it and staying on the meds
I put in a letter of Accommodation with my employer that included that I need to manage stress. It has been an extremely handy clause.
More handy clauses covered my having say-so about WFH and fatigue management (eg rest times, activity breaks.)
Way to advocate for yourself!
play chess online. Chess.com. I presently have 15 3day games (3 days to make a move) we usually all make moves within an hour. You can play people all over the world and at your level.
definitely blame ADT even if it isn’t. It’s miserable so it deserves the blame.
aint that the fn truth.....and to think the docs told me dont worry......theres no side effects....maybe a hot flash now and then........now the sob tells me you know that shits poison......and dont get me started on combining with erleada....the theme song of adt should be david crosbys: " if i could only remember ny name".......
Not sure there is a lot of option other than a dirt nap.
I feel like when I was on ADT I had increased difficulty focusing on what I was doing and multi-tasking. Some of this was age-related, but it seemed to get worse with ADT. After stopping ADT I feel like things improved back to a more normal level of absent mindedness. 🦊
There are well-known ways to confirm dementia, including cognitive testing and PET scans. Ask your doctors about cognitive testing.
I think this is humorous and informative, YMMV: If you don't know where your car keys are, that's normal. If you don't know what your car keys are for, you have an issue.
I thought I'd join the festivities here, but am I too late? If not, I have solved the memory loss issue by merely carrying around a large drawing pad and pencil. If I forget the name of an object when speaking with a friend(s) I merely draw a picture of the object and voilà they guess the name for me (almost like a quiz game). It works wonders if I'm invited (always am btw) to speak at the Ladies Sunday, morning communion breakfast. You should hear them rant and rave when I forget the word penis and I draw one on my pad. In fact sometimes I pretend that I forgot that word just to see how those ladies roar, whistle and sometimes applaud.
Good Luck, Good Health and Good Humor.
j-o-h-n
too fn funny j.oh.n.........you da clown prince of comedy....at the rate the royals are gettinc C youll be a king of nothing b4 long.....long live a Queen🤴👸🥸🏰🇬🇧
I have had a few issues. Searching for words more seem to be the most prevalent but less obvious. I have had about 4 episodes where I could not immediately identify where I was even though I was in familiar surroundings. That freaked me right out, but it has been seldom and only 3 or 4 episdoes.
Brain metastases
Diarrhea caused by Zytiga or EBRT Radiation? 
Cassodex OR Zytiga????
Lu-177 or Cabazitaxel
