Hormone therapy for post prostatectomy cancer recurrence.

[Brooktrout]

I have been reading that hormone therapy, including Lupron, can cause cognitive decline. Has anyone heard of this, or had experience with this?

Thanks

[tango65]

There are many articles published about this problem with ADT:

ncbi.nlm.nih.gov/pubmed?ter...

[joeguy]

I have been on adt for almost 2yrs with eligard, firmagon, and now xtandi because I have become castrate resistant. Cognitive problems have been a big enough problem for me that they have put me on "light duty " at work. I am a manufacturing engineer and large design projects have become challenging to complete in a reasonable timeframe.... it sucks

[whatsinaname in reply to joeguy]

Thank you, joeguy, for your complete honesty. Yes, ADT does effect ones cognitive abitity. To a greater or lesser extent. I have been on ADT for about 11 months now and things are bad but somehow I am managing. Possibly, because I do not have to work any longer for money.

Thanks again, joeguy, I sincerely hope things get better for you.

[ctarleton]

I've been on ADT for a little over 5 years since original diagnosis at age 65, and for the past 2 years on added Xtandi. Personally, I sometimes hesitate in recalling some specific detail, but still do well working the book collections of Sunday New York Times crossword puzzles. I subjectively think I'm doing OK cognitively on ADT, in relation to normal aging. I've known of others from support groups or on-line groups who have definitely made decisions to retire or downsize from their highly technical or cognitive-demanding vocations after going on ADT and/or other secondary cancer treatments. My general take on it is, "If you need ADT, do it..." It can often hold back advancing disease, reduce the pain from "mets", and improve longer term overall survival ... compared to no treatment or or long-delayed treatment, or ineffective treatments or alternatives.

Charles

[whatsinaname in reply to ctarleton]

Superb article, ctarleton, thank you very much indeed.

[Tall_Allen]

Conflicting data from poor quality studies. For example, these controlled studies found there was no cognitive impairment from long term use:

"ADT use was NOT found to be associated with significant changes over time in any cognitive test compared with healthy controls."

onlinelibrary.wiley.com/doi...

"A total of 12 months of androgen deprivation therapy were NOT associated with self-reported cognitive function changes in older men with nonmetastatic prostate cancer."

ncbi.nlm.nih.gov/pubmed/294...

It is entirely possible that the tendency of ADT to turn men into couch potatoes, depression and anxiety because of the cancer (with concomitant sleep deprivation), and that metastases may eventually impair cognitive performance. Lots of exercise psychotherapy with medication as needed, and activity of the mind and spirit may prevent that loss.

[Dayatatime in reply to Tall_Allen]

TA I respect your knowledge, to the point where I have shared some of your writings with my own oncologist. In this case I'm telling you with 100 percent certainty ADT does affect cognitive ability. I don't care what you list or who says any different. The best way I can explain is that you know what you want to say but it's like a delayed reaction coming out of your mouth. When speaking the words you want to say, those same words just seemingly leave your mind. I end up trying to find words I want midstream in a sentence and then it turns into trying to figure out a different way to say it. Sometimes you are left almost bumbling to complete a sentence. I work in a management position and it's not that I can't multitask. But dealing with as much as I do it definitely makes me aware I have to be much more careful in my reaction to different situations. I am in a position where I constantly have to think and I am telling you it does affect your minds immediate ability to process thought. Maybe it's worse in men on the younger side of this disease but from my own experience with this poison it certainly does affect cognitive ability.

[Tall_Allen in reply to Dayatatime]

That is your experience - not everyone has the same experience.

[pjoshea13 in reply to Dayatatime]

Having cycled many times between high-normal & castrate testosterone, I am familiar with what you describe.

The fact that not everyone experiences this (or fails to recognize it) does not undermine the case against ADT.

There are those who feel that they must defend standard care, but when one reads PubMed studies on testosterone & dementia, say, we sidestep bias & get confirmation that declining testosterone [T] is strongly associated with loss of cognitive ability.

The big question is whether impairment is permanent? I believe that restoration of T restores cognitive abilities (or substantially so.)

From a 2018 "Review on the Effects of Testosterone Supplementation in Hypogonadal Men with Cognitive Impairment."

"Cognitive function and testosterone level of men decline concurrently with age. Low testosterone levels are associated with higher risk of Alzheimer's disease and mild cognitive impairment in men. There are continuous debates on whether this relationship is casual. This paper aims to summarize the current evidence on the association between testosterone level and cognitive function in elderly men. The presence of testosterone, androgen receptor and its responsive genes indicates that testosterone has biological functions in the central nervous system. The ability of the body to convert testosterone into estrogen suggests that part of the actions of testosterone could be mediated by estrogen. Observational studies generally showed that low endogenous testosterone levels were associated with poor cognitive performance in healthy elderly men. Testosterone substitution exerted positive effects on certain cognitive domains in normal and hypogonadal elderly men. In conclusion, testosterone may influence cognitive function in elderly men and its substitution may be considered in men with cognitive impairment and testosterone deficiency."

ncbi.nlm.nih.gov/pubmed/289...

It is unhelpful for others to blame the victims via terms such as "couch potatoes".

-Patrick

[Dayatatime in reply to pjoshea13]

My father often uses the phrase "can't judge a man until you walk a mile in his shoes". Maybe if somebody actually ever walked that mile with advanced disease and had the brutal treatment that follows they would understand why we often go outside of standard care.

[joeguy]

I am at 23 months of adt and can state for a fact that brain fog and cognitive function decline has been a problem. The other issues are constant fatigue, weight gain, and man tits

[whatsinaname in reply to joeguy]

Same here. Except for the "tits" part Weight gain is minimal but could become a problem, going forward.

But, constant fatigue is there for sure. And, brain fog with possible cognitive function decline as well. I took an online British IQ test (paid 20 pounds, I think) and scored 123 which, all said and done, was not too bad.

I exercise my mind a lot more than I do my body and hope that I can manage this very strange situation brought on for sure by these damn cancer drugs.

[Jimhoy in reply to whatsinaname]

I inadvertently left my man tits out of my list below the other day!

Though not relitive to Lupron Brain Fog or cognitive decline symptoms, It is likely one of the most bothersome of the expected / common side effects of Eligard. Combined with the ED and total absence of labido eliminating our love life, now I can’t even hug my wife!!! It is sooo terribly painfull to touch! Can’t sit my 2.5 yo grandson on my lap while reading to him to sleep anymore. Can’t hug family and close friends either which is awkward because very few know about my condition.

There is ABSOLUTLY NO QUESTION in my mind this is all caused by the damm drugs (or the result of the damm drugs (my bodys reaction to depleting my testosterone)). The drugs that don’t cure, but treat my cancer by starving it to death in lieu of visa versa!!!

Speaking of death, I am scared to death regarding its permanence! I start my Eligard QoL vacation in a month and time will tell.

Jim

[Schwah]

I guess I am lucky. I have no cognitive deeeclyne ad al. Eye feeeel is xactlee lyke meye shelf.

[Jimhoy in reply to Schwah]

Exactly how one of my sentences look before spell check and someone proof reading for me!!

But it’s not real.......right!!!!

[Schwah in reply to Jimhoy]

No not real. I actually have very little side affects from ADT Zytega other than a little tired now and then and a few stomach issues now and then. No brain fog luckily. I attribute it to my tough exercise routine. But who knows.

Schwah

[Brooktrout]

Just want to thank all of you for your input. It is very much appreciated!

[Jimhoy]

Even though, when you talk to your doctors about it and they look at you as if you told him that you saw a UFO.....IT IS VERY REAL....!!!!!!

Like any other drug, side effects vary from person to person! I have read that about “Lupron Brain Fog” as well.

I have spent months trying to get answers that I / you can’t from the professionals!! The first doctor that admitted / accepted my complaints told me he actually did not believe in LBF until a colleague and close friend complained to him about the symptoms! He further told me that the guy had to give up his pratice due to this condition!

I AM, IN NO WAY INSINUATING THAT YOU WILL GET ANY OF THE SYMPTOMS I EXPERANCED. I have however read of others complaining of the same. THIS IS PARTLY MY VENTING FOR THE NAYSAYERS!!!!

These are some of my indications that something was wrong;

*my saying things that weren’t true. Like answering a simple question with an answers that I had no Idea where it came from!!completely off the wall!! And have the sense of mind to realize it!!!! Or Coming out of a meeting and people confront me with lines like “what the f&$k is wrong with you””what the hell were you talking about””a little early to be drunk...ya think”..... you get the picture.

*while driving my normal routes, I found that I (briefly) didn’t know where I was or where I was going!

*if I could find my keys, phone, glasses, etc, I would sure as shit drop them!

*watching someone trip over their own feet and roll down the sidewalk is hilarious....until it’s you almost every day

*inability to carry out a spontanious conversation, draw a complete blank and stand there like a moron!!! Thats if you recgonize the person to talk to in the first place.

*completely unorginized! Simple logic...gone. And the mistakes......as the kids say, OMG!!!

*math.....forget about it!! Problems once done in my head are tough even with a calculator.

*reading...writing, how about 5th grade level now. (Yes, I have help doing this today (notes, spell check, proof reader.....)

*memory....gone!

*tired, irritated, mad/rage....cry.....! Only choices, pick your mood!!

*total fatigue... need to take a nap just after waking up from a nap but can’t sleep at night

*joint pains and obesity

*unsociable

BUT ITS NOT REAL......RIGHT!!!!!!!

And you’re not stupid to the fact that you see the change in you!!! You can actually see what is happening to yourself, compare yourself a few months ago. It’s clear as day.

Hay and guess what, these are in addition to the normal / expected side effects of Lupron / Eligard (newer version of same drug).

At the end of the day, you’re alive to complain because of these drugs.

However, I was reminded of a term on this site. Quality of Life Vacation / Holiday. I didn’t think about it and therefore I started looking into for QoLv too late into my treatment. Became / is a nightmare for me ( if I could sleep at night). I lost my job 8 months ago which manifested my depression(?). Though not formally diagnosed as depressed (by my own choise), even someone that has ended up as dumb as me can see it!!!

Since my (what is now considered) final Eligard injection in Nov 2018, I have dumped my Eligard salesman of an Urologist and started my QoL with my new Urologist after what will be 18 months. I am hoping that the drug will be weaned out of my system soon, my PSA levels behaves and I can look back at this nightmare as a victory!

So, my advice to you is, I pray that you treatmeant is a breeze but If the drug gets you, keep in mind that you can insist that it be managed so you don’t get to the extent that I got to.

Jim

[j-o-h-n]

Not a problem.... I can even remember my twin brother's birth date... but what the hell is his name again? Okay, here I go again A.B.C.D.E.F.G.H.I.J. Okay got it now, it's John.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/21/2019 1:13 AM EST

[Jimhoy in reply to j-o-h-n]

Reminds me of the show with “hi, I’m Daryl and this is my brother Dayrl and my other brother Daryl”

[j-o-h-n in reply to Jimhoy]

Correction. My Twin brother's twin sister's name is John...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/22/2019 12:52 PM EST