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Prostate Cancer Network
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End in sight for Lupron Brain Fog

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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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.

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Excellent advice. Jim, I hope you find some remedies about your job because that is complete bullshit that they fired you due to a medical condition!

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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!!

Thank you for your advice and insite!!

Jim

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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.

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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”.

Good luck sir.

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SoB, You made me cry a bit!!! I’m praying that in months to come, this crap gets out of my system, doing nothing but saving my life!!!!

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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

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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.

Thanks again

Jim

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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.

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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

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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!!

Jim

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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.

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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 for your comments, much appreciated!

Jim

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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.

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