I was diagnosed with PC in April 2017. I do not recall my Gleason and other information due to severe Lupron Brain Fog. My memory is toasted!!! I’m sure the wife has it written down somewhere but she’s at work (the lucky stiff). I recall that my cancer was limited to the left side of my prostrate and no further!! I opted for Radiation and Hormone treatment. I completed 44 doses in Nov 2017 and received (what turns out to be) my last 3 month injection in Nov 2018. Eligard in short, kicked my A$$. I had every side-effect on record!!!! Lupron Brain Fog being the worst causing me to lose my job in June 2018 for lack of cognitive skills like math, reading, conversation, memory etc..... causing me to make financial and procedural mistakes. Extreame fatigue, “Very” agressive mood swings (guess you could call it rage) and being as dumb as a rock at meetings, iced the cake. I didn’t even realize it was happening to me. I was / am extremely unorginized, clumbsy, and found myself needing to double checking everything because mistackes were being brought to my attention. Thought that I onset of Dimentia or something but didn’t have the sense to get that checked out either!!! “I” would have fired someone like me!!!!
Doctors didn’t offer the possibililty of having LBF and to date admit to not knowing much about it! I found all I know about it on sites like this!! (Chemo Brain Fog has the same symptoms)
Closing: I made a deal with my Urologist to suspend the Eligard and monitor my PSA. God willing the side-effects will subside and the PSA will behave so I can look back at this nightmare as a victory. until then, I’ll continue to say “at least I am alive”.
Ps: I am fairly new to this site and received a chat advising to tell people about myself so....there ya go!!!!
I would however, love to hear from members with LBF experience and advise if I am being overly optimistic in my closing!!!!
Jim
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Jimhoy
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Hi Jim, I started Lupron on May 2018 and my last 3 month shot was Aug 2018. I still have hot flashes at night and sweats. I also noticed some memory loss and fog. However nothing like your side effects. Here is a good comprehensive review of the issues ncbi.nlm.nih.gov/pmc/articl... Regarding your job loss, even though you believe you would have fired someone like yourself if you live in the USA you are protected by the Americans with Disabilities Act Here is a link to the ADA network adata.org/ . They have regional offices and their services are free Also since you lost your job and may have experienced financial loss because of your disability and your previous employer may be financially liable for the failure to offer you reasonable accommodations for your cognitive impairment. Although you may have willingly signed up for disability benefits often employers guide you to this process rather than trying to help your keep you job. If so, this would be something to discuss with an attorney. I hope you feel better soon.
As I’ve spent days & weeks & months reviewing all I can find about Lupron Brain Fog, once I learned the term and related it to my condition!!! Desperately seaking reasons for my feelings / condition. I will surely read your link? I appreciate it and thank you in advance. I hope to gain more insite from it!
Regarding your comments about my work thing! It’s sort of like “not seeing the forest for the trees”!!! The former me would have recgonized the ADA’s rights! Whether I would have pursued it after realizing I was not capable of performing the duties that I agreed to do upon my hiring, is another story!!! How and why I was acting the way I was is not his (my employer) problem and is not clinically proven, because most doctors in this field don’t recgonize the symptoms of LBF!!! I surely burnt a bridge with this guy due to my actions (voluntary or not) and I accept that!!! Might be an avenue to peruse reinstatement but, suing him?....thats not me!!! I am very good at what I do and will work tomorrow, once this crap wears off and I resume my prior self!!!
I want to be clear that I’m not looking for drama or sympathy!! Just stating my story as requested by the site administrator! But I do admit, it was a very good and needed vent!!
The ADA is only applicable if there is a reasonable accommodation that the employer can provide without undue hardship, one that will enable you to perform the essential functions of your job. If your job requires a high level of cognitive ability—e.g., analytic skills—I don’t know of any reasonable accommodations that would enable you to function at this level if you are cognitively impaired. If anyone knows of any I would certainly be very interested in hearing about them.
Hi Jimhoy. I have had 12 months of ADT (Lupron $ Eligard, 6 & 6). Fatigue, brain fog, muscle loss, intimacy loss, hot flashes and more. My sentence was for 12 months. Now I am waiting for the drug to leave my body so I can find out if I will recover. Didn’t lose my job but did make some stupid decisions. Hope you can recover and move from “I’m alive to I’m living”.
I was diagnosed at 42. After surgery, my psa was measurable, so I was put on ADT and had radiation. I was on ADT for 2 years I definitely had LBF, hot flashes and also had pretty regular laughing spells. I finished my treatment about 9 months ago. My brain definitely is better, fewer hot flashes and laughing spells are largely done. Glad to feel more sharp and normal. But wish my libido would return. Hang in there. Love the life you have. I do. Cheers
If every day had a little victory for me, then posts like your’s would be one of them. There is no check list of symtoms for LBF and it dawned on me upon reading your post that one of mine went undetected!! The laughing!!! Every day that ends in “Y” are the same for me (mood wise). Its like walking a tight rope between rage and crying!!! Sort of the tears of the clown, I have to squelch both moods for the sake of family and friends!! I don’t need to worry about co-workers because I burned that bridge!!! Anyway, once in a while I can recall belly laughing over something moderately funny or stupid!!!! Looking back now, I was the only one cracking up!!! Didn’t consider that to be a mood swing!!!!
The little victory here would be my being a little more optomistic that I “will” get my brain, personality & body back. At 63 in lieu of your 42-44?, where as youth gives better odds of testosterone recovery. I will hold off on the ballons until I see results for myself, but it adds my hopes.
Thank you and good luck with the libido. Penile rehabilitation is my next long row to hoe!!! I was hit hard there (no pun intended)!!! I wish I could give you some good advice but I am still as dumb as a stump from LBF!!! I’m 1/2 way through my last 3 month injection! So in the back of my mind, I expecting to see improvments in a few months, God willing!!
I‘ve seen posts about “testosterone treatments” which may be an option for you.
Jim, i want to encourage you not to squelch those moods.... i think embracing the tears and the laughter will be a great thing ... But please don't ever get too sad. Nothing in life is that but a deal but ...crying is good. Release that energy and then have some fun. Life is a gift. Please enjoy it. I don't worry about sex. I'll find a way to enjoy it.
Hi all i've been on monthly lupron shots for 2 years no side effects,i am stage 4 cancer.lost all my hair got it all back, look like shit now, i am on XTANDI does better than chemo.i read all these pages i see a lot of abbreviations i don't know what they mean,clue me in.the lupron keep's the testosterone in check,slows the cancer i do not see any memory loss,i can still run a chain saw use a big hammer beat the shit of everything weld it back together there seems to be a lot of needless worry here don't believe every thing you read, get on with your life,get out of house be yourself have a nice day
People post on these sites for a number of reasons. For myself, I post firstly, to get information that I can’t get from my Doctors!! Lupron Brain Fog is my issue!!! Most Dr’s as do you, don’t seem to belive in it.....so be it, .....but it is VERY real!!!
Secondly, to vent!! I’m not a “head shrink” kind of guy!!! I will not accept a diagnosis of being depressed!!! I don’t bother my family and friends with my problems!!!! Only a couple of very close frinds know about my condition and at that, only so my wife has someone to talk / vent to when I’m being too much of a prick! Don’t even know why I do that to a woman I have loved, faithfully, for over 46 years!!! Maybe it the lack of the head shrink thing!!
I don’t wreck things to fix them, I am a master union carpenter by trade!!! I’ve built schools, hospitals, skyscrapers, treatment plants, laboratories, bridges, etc. I drive piles / shoring etc, form masive concrete walls, bridges.... construct the entire building envlope, doors & millwork. I build water & waste-water treatment plants including masive earth work, massive concrete structures, including rigging, scaffolding, shoring and millwright, etc. I also run work as Superintendent & Project Manager. All “hands on” work!!!! Now I can’t!
So, I hope your post wasen’t written with the malice that I read into it!! If you are fortunate enough to receive your treatment without side effects (as they do vary greatly by individual) then, hurray for you!!! I’m f*$#ing impressed and also jealous!!!! But telling someone that has lost most of their cognizant ability “to walk it off” is really simplistic and pretty damm condescending!!
God forbid that the tide turns and in lieu of judging others, you end up being the one who, all of a sudden, can’t figure out why it’s so difficult to read, you can’t do simple math, you can’t speak spontaneously or intelligently, you trip over your own feet, you drop about everything you pick up, you can’t rember shit, you simply hate interacting with people, you can’t sleep at night but can’t stay awake in the day, why every joint in your body is killing you, why am I 70 lbs over weight when I eat right and excersise the best I can, why am I always feeling the need to either cry or to punch someone in the throat, you don’t get why, you used to build buildings and now you can’t assemble a kids toy, etc. or maybe you’ll just need to vent!!
Please vent away, Jimhoy. Oldsilverado's comment about "...needless worry here..." was incorrect and insensitive. We all definitely have different side effects and cancers and life situations. I'm very sorry to hear of your struggles. I hope you can find a way to enjoy. Best.
I had a response for your earlier post but my i-pad crashed! So I will combind the two.
First, A brief paraphrase, “Let your feelings out”, I get it!!! Not in my DNA, but I get it!!!
Secondly, I did feel some remorse after my last post, with the thought that Oldsilverado didn’t mean it, the way I read it, and that his words were his way of coping!!! I was sort of punching the wall on a bad day! But you are right, (where my core values force (?) me to keep my problems close to the vest), we appreciate the availability of an anonymous forum where we can blow off some steam!
Thanks so much for your post because it reflects a lot of what I'm going through. I was told that radiation causes fatigue (which it surely does) but that about a month after radiation stops, the fatigue should go away. I'm over two months past radiation but the fatigue lingers on, and so I've been wondering if the hormonal treatment (first Lupron and more recently Zoladex) might be the cause. I fight fatigue every day, and my job is getting more difficult due to stupid procedural errors and slower mental processing -- for instance, I often end up reading the same paragraph a few times before I get it. I work with words, so this is a huge impediment. Mostly, I'm covering up for these things but it gets discouraging especially since I've got another 1.5 years of hormonal therapy ahead of me. The mental fog also keeps me from driving, so I rely on my wife and Lyft rides to get around. I've received excellent care overall, but the one annoyance is that my doctors don't really appreciate the diversity of side effects men experience and stick to their list of effects that the "average" patient has. Anyway hang in there. That's all we can do. Someday, with luck this shall pass.
I was on ADT prior to ERT. So the “normal / expected” side effects were already in place. Insomnia & fatigue was already taking its toll and I think that stopping work everyday @2:00, sitting in the waiting room, lying on the table for 10-15mins kind of put me in a nap mode / wiped out!!! I don’t think the actual radiation caused it but.......
I wish I could offer you inspirational comments regarding brain fog / cognitive-executive decline but you’re seeing sign that I recall and “I” describe them this way;
Brain Fog: sort of a bad hangover feeling, lethargic and numb.
Executive impairment: difficulty organizing, multitasking, logic, common tasks, etc
I was responsible for managing multiple projects. Tasks included estimates, budgets, schedules, procurement, meetings, payment requisitions, personnel management, safety, quality control, problem solving and sooo much more!!! Along with some hands on building!!! I’ve been doing this (extremely well) for years. At the end, I F&$#ed up every one of those tasks and on a regular basis!!!! Mistakes were being brought to my attention on a daily basis for which I became very argumentative!!! I had piles of documents sitting on my desk, my table, my floor and could not figure out how to file them!! I had no idea how to start a spreadsheet!!! Daily reports and time sheets.....useless!!!! I really didn’t answer to anyone other than providing a sit-rep weekly or biweekly to the owner!! I could manipulate my schedule to include treatments, appointments and what turned out to be mandatory nap time. I could not safely travel the hours needed between home and the office or projects and between projects, especially in Boston traffic!!! I didn’t know the owner saw what was happening to me (I honestly, did not see what I was doing!!!) and had others paralleling my work. Clients and the guys on the jobsites were reporting my questionable actions and I was seen in a rest area taking a nap!!! They accused me of both drinking or on drugs. Yes, fired on 5/9/18. At that time, I had not found much information regarding my side effects. My Doctors offed little to no help and clearly never mentioned these effects......ever!!!! Finding myself unemployable for the unforeseen future, my career virtually being over!!!! I could not collect unemployment, so I convinced my Dr, (based upon my word that I can not perform my job as I knew it) to sign off on my TDI application (in RI, we have a state temp. disability insurance benefit) of which I was approved. Realizing no relief (and even worsening symptoms) I exhausted those benefits at the end of Dec 18. So I had no other option but to early retire at 62yo.
I had my last Eligard 3mo injection on Nov.9th 2018. In theory, ADT ended @ Feb 19. My T has been 15ng.... and PSA <0.1 for the duration and last week, 4 months out of the treatment, my T is 18 and PSA is still <0.1. I have absolutely no relief from any of the side effects and I am now being treated for depression and anxiety. I’m told that symptoms will subside when my T returns to “my” normal levels. That level was never recorded but if the average is 270-1070, you can do the math if I gained 3ng/gl in four months!!!!! No end in sight!!!!
My advice, ADA has standards for this sort of thing. Look into this or post for opinions on HC. Alot of smart people here! When you know the facts, Let someone know what you are feeling / experiencing!! I believe it is the employers responsibility to help you or at least, not discriminate if your symptoms become more of a hinderance!! And exercise your mind, body and sole. Also, I have found relief form the fog and joint pain recently when treated for inflammation. Unfortunately, anti-inflammatory meds will kill you in other ways!!! I just began trying to eat more anti inflammatory type foods.
Sorry for the vent!! Feel free with questions or comments?
I also believe that Lupron Brain Fog is affecting my quality of life. Would like to hear from any others on this topic. I am 76 and had radical P followed by 40 radiations and 2 years of lupron. Does the brain fog go away later ?
Hi I was on lupron for a year and my last dose was this february. I am still experiencing all the side effects, hot flashes, and brain fog (reduced cognitive function which is devastating for me). Im young and have been competing all my life and havent been able to anymore because my brain just doesnt work well anymore, also lost my job. I havent found many places for an answer to if my brain will go back to normal when my testosterone comes back. Id really appreciate anyone than can tell me what they know.
Wish I could help but here we are 9 months after my initial rant / post and I can honestly say I have no relief from ANY of the side effects to ADT or to Eligard (equal to Lupron (which ever one caused them))!! Worsening if nothing else!! Now I am having speech issues!!
My 6 mo period of being off Eligard came and went in June which showed that I was still full blown ADT which brings us to now, where my bloodwork is due in 4 weeks. Be very interesting what the numbers are!!! Got a sneaking suspicion that my answer to you will be at least another 6 months away!!
i have read all of your comments on here regarding lupron [prostap] to me i live in England.I had 37 radiotherapy and 18 months lupron 3 month jabs,should have been 2 years.My last jab ran out march 2018,and i feel worse than ever,still no sex,huge anxiety and depression and all the effects you guys have on here.Good luck to the chap who got no side effects,he is so lucky.I eat well yet have put on loads of weight round my middle that will not go, mini boobs and achy joints.I am simply not who i was and i hate it,i am happy to be alive but my QOL has taken a big hit.
Does this stuff ever fully leave our system?or do the side effects go on and possibly get
worse.I really thought i would feel better after not having a jab since Christmas 2017.
Sounds like I’m about one year behind you so I’m quite disappointed to hear you have no relief from the effects of the monster!!! I keep being told to give it 6 months (keep = 2nd time ( likely going on 3 times next week!!)) Now I recently heard to be prepared to accept a new norm!!! Sucks out loud but what can one really do about it at this point!!! As I write this and think about it, I want, want, want my old me, but people in hell want ice water!!! If it’s not going to happen, maybe I stop whining and accept it, and if in time it clears up, then Merry Christmas to me!!!!
In a recent post, we have had good discussions about the absence of being warned about this possibility!!! I’ll still fight for that!!!!
Sorry to be the bearer of bad news Jimhoy,but it is what it is.I have read about others like us,no info about the real side effects.
I told them i suffered from anxiety and it turns out lupron causes anxiety it was bound to be a car crash.I do not smoke and now i do not drink because of lupron,plus ed.I eat almost a veggie diet etc,my psa seems o/k at 0.16.
I was gleeson 7, 3/4 and a psa of 38.4 locally advanced, no spread, i was down for 2 years lupron gave up at 18 months.
I am soon to be 73,but i still want to LIVE.This stuff has taken the joy out of my life and that of my wife,i have read letters from wives saying the same thing,their husbands are not the same any more,some are really nasty.
I suppose we have to get on with it,but i am with you on this Jimhoy it sucks.
Thanks for your reply keep in touch if you wish.Geezer46.
Jim as regards lbf,i do all sorts of crosswords but like you it does not really help.
As for down below,a peanut being small and a coconut large i now rank about a hazelnut lol.
Have you had your T levels tested?mine are still on the low side and low levels affect mood and cognitive skills.I asked for a shot of T but doc refused said the cancer may return.
It seems like we are left to just bat on,i told my doc about anxiety he said go to psychotherapy,i said i have been going there for 2 years,he just stared at me and shrugged his shoulders.
Sooo with severe cognitive and executive abilities damages from ADT, I spend my day doing mind exercises. Doesn’t help much but hay, it passes the day!!
That being said, I need you to know that if my toilet emptied into my swimming pool, it will take about 2 years to refill it!! Not accounting for evaporation!! So, all the more reason to say “if its yellow, let it mellow!! Save the planet!!!
So yes, I do the same..... but crosswords got boring! Now I do what ever (like above)!!!! I like to read but that is quite painful (on an adult level) now!
My tits are bigger than my wang. And thats no consolation !!! About 6 months into my sentence, while at a follow up appointment, I pointed to the poster of the guy sliced in half on the wall and told the Dr that I wanted to look like that guy again!!! He described my scared little turtle, afraid to come out of his shell!!! Sent me to Mens Health who prescribed low dose Viagra and a penis pump. Both to get blood into the penis. I take the pills but can’t bring myself to pump!! I’m not going to say that I have begun to see improvement because of the still 50 extra pounds of gut, but I can feel improvement!!
“T” and PSA test this week with (2nd 6 month waiting period) follow up appointment to follow next week. After the first 6 mo’s off Eligard, I was still full blown ADT. Now 6mo’s more, I feel that side effects are unrelenting so I’m not expecting much rebound in T.
Side effects are worse now if anything, with the addition of verbal problems.
* enter into a conversation and all of a sudden....nothing..... can’t think of a thing to say!!!! Some verbal diarrhea might spill out but nothing pertinent!!
* loose a word in the middle of a sentence.
* use an entirely wrong word in a sentence.
* occasional stuttering.
Someone eloquently referred it to “poor verbal agility”!!
With the little education that I have (received mostly on this site), the PSA in what you need to keep down, not testosterone!! A T shot and closely monitoring PSA is going to be my plan of action if my T is not rebounding. If PSA is out of line, I plan on insisting on Estrogen patches in lieu of Eligard or its equals!!!! With the side effects that I complained about at my last appointment, he was talking surgical castration as my only option to eliminate the drug!!! I could go on but, you get it!!!!
I suffer from EXTREME ANXITY!!! I used to be the instigator of the rowdiness!!! “Look out.... Jim’s here”!!!! Now any kind of crowds, kids playing, barking dogs........ blows my head gasket!!!! I to was told to see a shrink. I did for a few months until we mutually agreed that we have talked about all we can talk and if I need him, call!!! My PcP was prescribing the drugs and monitoring me at that point! I have tried a number of things but where they might relieve the depression and anxiety, they replace it with a feeling of intoxication and migraines, etc!!!
I now take an Ativan if things are really bad but I had to give up beer just in case Of needing it!!! So there goes some more of my QoL!
Please stop me!!!
So, I went from 61 (going on 41) to 63 (going on 83 (64 in 3 weeks)) in the drop of a hat. I can still see that 41yo but I just can’t reach it with that 83yo sitting on my chest!!! The grand kids no longer ask me to play catch anymore, but I want to!! They don’t ask to shoot hoops anymore, but I want to!! Playing football...... and so on and so on!!! I want to but they know I can’t!!! At 3, 6, 10, 11 & 12, they don’t know why, just that I can’t. That is the worst!!!
So, Yes, they’ll leave us to “just bat on” and I will! I’ll keep my fight going on my terms!!
so if your speech impediment is a recent thing,then prostap is still working on you unfortunately new things are happening to you.This is not what is supposed to happen we should begin to feel better.
I hope you get your T shot and that it works for you,i cannot get one here.
Does viagra work for you?and what is a low dose?Have you had any side effects from it bad headaches etc.I have worried about taking them wondering if they affect your brain in any way.
I know what you mean about feeling 20 years older but still younger in your head it is awful especially for you with those kids wanting to play.
so if your speech impediment is a recent thing,then prostap is still working on you unfortunately new things are happening to you.This is not what is supposed to happen we should begin to feel better.
I know!!! I’ll have my bloodwork results before I meet with my Dr’s next week so I believe I will have my answers without asking a question!!! Even if my T is rebounding and the side effects are both still unrelenting and worsening!!! I say this because even if they believe me, there is just no real data from research into the problem of the effects of ADT on our brains!!! They are not informed other than what I and maybe a small hand full of men have complained about!!!
We shall see!!!
I hope you get your T shot and that it works for you,i cannot get one here.
Thank you, but I honestly hope I don’t need one!! I pray that my body is doing that naturally!! Once again, we’ll see!!
Then I have to think that a T shot is not something drawn out of a donner. So I assume its another drug and I wonder if this is going to grind my gears more???????? My history of coronary artery disease, along with now aPC have proven my lack of tolerance for drugs!!!!
Does viagra work for you?and what is a low dose?Have you had any side effects from it bad headaches etc.I have worried about taking them wondering if they affect your brain in any way.
Another short story!!! As I stated I was sent to Mens Health for penile rehabilitation. They made the two recommendations that I mentioned. The Viagra was prescribed just for intercourse!! The script was for 90 / 20mg tab’s, “take 3 to 5 as needed........”!
I read here that (at Malecare / HU) that it is common to take low dose Viagra (or equal) to maintain nighttime erections. Evidentially, while we sleep, we have a multitude of erections suppling blood to our penis. Our body does not rely solely upon sexual stimulation to maintain a healthy penis and avoid atrophy (use it or loose it( thats a big word for me...I had to look up the spelling😂🤣)). I knew nothing about this before and my damage might have already been done. But I began taking one 20mg per night and yes, it seems to be helping. Not the “morning wood” I recall but CLEARLY better than without!! Even if I wasn’t having (what we’ll call) an erection (for lack of another term) at least I know blood is flowing and hopefully preserving my meat while I recover 🤞🤞🤞🤞🤞🤞!
I know what you mean about feeling 20 years older but still younger in your head it is awful especially for you with those kids wanting to play.
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ADT with psa increasing.
Rising psa after Eligard and bicalutamide, in 9 months. What treatment now to stop the psa rise? 
My turn for advice
PSA nadir
Sustained bounce + blues (SBRT)
