"Brain fog": Some of you men in this... - Advanced Prostate...

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"Brain fog"

Okay4now profile image
99 Replies

Some of you men in this forum speak of "brain fog"from prostate cancer meds. I'd like to know specifically how you would describe that. In particular, are there memory issues? I have enough memory loss to concern me. My pc drugs are: Lupron and Darolutamide. But I also take Lithium Carbonate, Lamotrigene, and Wellbutrin for depression, and some people complain of brain fog while taking them. And, of course, age is a factor; I'm 74. I would appreciate hearing from your personal experience.

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Okay4now profile image
Okay4now
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99 Replies
ARIES29 profile image
ARIES29

Brain fog for me is walking into a room & not knowing why & not beign able to make definite decisions. I am sure most here suffer the same.

Exrecise helps & i take Magnesium L-Threonate for memory loss. My ADT now is Nubeqa as I could not tolerate Lupron.

Okay4now profile image
Okay4now in reply toARIES29

Thank you for your response. I've been taking Magnesium Glycinate, but I will try the L-Threonate. It's great that Nubeqa alone works for you!

ARIES29 profile image
ARIES29 in reply toOkay4now

I gota say after reading all the responces to your post sir, Thank God for Healthunlocked & beign able to read other mens problem & knowing we are not alone in this end of life dilema.

Okay4now profile image
Okay4now in reply toARIES29

Amen, brother! Frankly I am humbled by all the responses, and very grateful. I hesitated to post about brain fog, thought it might be boring, but I'm so glad I did. I too am thankful for the way that Healthunlocked brings us together.

larry_dammit profile image
larry_dammit

can’t really describe it well. I knew what I wanted to say but often couldn’t say it, names escaped me. I’d have to draw a picture of what I wanted to say in my mind and finally if I waited long enough I could say it.

Okay4now profile image
Okay4now in reply tolarry_dammit

Thank you, sounds familiar...

Kaliber profile image
Kaliber in reply tolarry_dammit

Yeah , I ……. Uh ….. ummmmm …. Er ……. Yikes ….

Some days it gets pretty bad ….

❤️❤️❤️

London441 profile image
London441

Nothing is commonly experienced more by us than brain fog from ADT. And yes of course age is a factor.

Some supplements may help a bit, but nothing works to relieve it nearly as much as exercise. Also be sure to keep your mind challenged, especially by endeavors thoroughly unfamiliar. Great luck to you!

Doctorsceptic profile image
Doctorsceptic in reply toLondon441

Hi. I have commented below. As a retired doc I have been pretty disappointed by the apparent lack of awareness amongst oncologists and that patients are not warned of this risk.

Okay4now profile image
Okay4now in reply toLondon441

Next month I'm going to the World Nomad Games in Kazakhstan - to attend, not to compete. That will be the most unfamiliar experience I've ever had. Thank you for your ideas !

Doctorsceptic profile image
Doctorsceptic

The term brain fog is used by doctors and patients. It is probably more accurate to call it “impaired cognition”. Then one can ask what aspects of cognition are affected.

I have experienced this with adt and enzalutamide and was not warned about it by the oncologist- I experienced making mistakes with arithmetic (bank accounts), and misunderstanding when reading. My visual awareness was affected - especially when driving and my wife kept pointing this out. Especially spatial awardness and driving too close to the left (UK). Eventually hit a parked car! My memory was not as good especially for names of people and things.

After several months off treatment I am probably back to normal except for memory.

The medical literature (Scandinavia) reports an increased risk of dementia with ADT. Altered visuo-spatial awareness is specifically mentioned. Perhaps not surprising when you remember that ADT can cause metabolic syndrome and type 2 diabetes which also are associated with dementia.

So yes, androgen deprivation affects the brain and in rather specific ways. I am now 78 and I suspect that these effects may be more apparent in older men.

If you Google adt and dementia or similar you will find the articles.

Okay4now profile image
Okay4now in reply toDoctorsceptic

"Visuo-spatial awareness" is exactly right. I totaled two cars, 8 months apart. You say you are off treatment. Do you have a substitute, or are you just giving more attention to QOL?

Doctorsceptic profile image
Doctorsceptic in reply toOkay4now

I am now QOL first and off all meds! Am going to get a second opinion from a good experienced Edinburgh oncologist in October to review everything and help me decide the way forward.

I also know of a friend of a friend who, on androgen deprivation, became suicidal, got on his bike and rode straight into front of a bus - deliberately! Multiple injuries but survived.

Warning patients of visuospatial and brain problems should be mandatory . How many more out there?????

babychi profile image
babychi in reply toDoctorsceptic

My buddy doesn’t understand that he is not as “aware” as before his ADT. His memory recall is atrocious. His Cancer Centre Oncologist dismissed my concern.

Doctorsceptic profile image
Doctorsceptic in reply tobabychi

Sorry to hear that. Does not say much for your oncologist! Suggest he reads the medical literature.

babychi profile image
babychi in reply toDoctorsceptic

He asks the patient and notes responses. Instead of listening to support person. If brain is fogged responses are easier to ignore! 😎

Doctorsceptic profile image
Doctorsceptic in reply tobabychi

Confront the b****r. Suggest to your friend he gets a new oncologist.

Okay4now profile image
Okay4now in reply tobabychi

Not exactly the holistic approach....sorry you have to deal with such an attitude. I remember the urologist who introduced me to Lupron. He said, " You may have a few hot flashes. " Minimizing a treatment that has turned my life upside down.

babychi profile image
babychi in reply toOkay4now

Yep, dismissive and some do not care. Hope time improves your situation.

addicted2cycling profile image
addicted2cycling

Can't reply regarding the *brain fog* because in April 2015 when my Urologist suggested ADT drugs be started immediately I told him to castrate me IMMEDIATELY. Best thing I did for my brain and so far doing OK for a 74yo GL10 eunuch who went out yesterday and bicycled 51 miles, 49 for our daughter's 49th Birthday and 2 extra just for good measure.

Okay4now profile image
Okay4now in reply toaddicted2cycling

Glad to hear that. especially after 9 years ! I also am 74. I've considered surgical castration, but aren't there still meds involved?

addicted2cycling profile image
addicted2cycling in reply toOkay4now

ONLY thing I take is Dutasteride

Okay4now profile image
Okay4now in reply toaddicted2cycling

Wow!

Jeremiad53 profile image
Jeremiad53 in reply toaddicted2cycling

I asked my Doctor to castrate me upon telling me of the treatments and what they will do... mostly reduce hormone levels. He scoffed at me, he also told me that if I didn't take the Covid vaxx I would die from Covid and not cancer. I laughed and said THANKS... I am still angry with him, in the hustle and bustle and shock of diagnosis, I did not have the balls to push back. The #1 thing I tell people is, get castrated immediately.

Okay4now profile image
Okay4now in reply toJeremiad53

Not a time for scoffing... thank you.

vintage42 profile image
vintage42

"..."brain fog"from prostate cancer meds. I'd like to know specifically how you would describe that. In particular, are there memory issues?"

I am almost 82 and have been on Orgovyx ADT for 9 months and Abiraterone ARI for 6 months. For me, brain fog was not loss of any memory, or ability to think. I would call it more like attention deficit, where thoughts would interfere with an ongoing activity or a plan, especially if trying to do several things at once or in a sequence. It was a minor annoyance and I don't much notice it any more.

On the other hand, ten years ago my younger brother had several rounds of Lupron ADT and developed dementia over the next few years. His wife blamed the shots even though she was not a computer user who could have looked up the possible relation. However, he did have a slight problem with short term memory even before his cancer, such that he failed a telephone interview for long term care insurance. We are curious whether his dementia is vascular or Alzheimers or whatever. Last I heard, he was refusing to get a diagnosis of the cause.

Okay4now profile image
Okay4now in reply tovintage42

Attention deficit is familiar to me. I have always daydreamed, but lately it's sometimes embarrassing. Like being in a group of people, trying to pay attention, but then the whole group laughs, and I have no idea why.

Mascouche profile image
Mascouche

Brain fog is used as an umbrella term for impaired cognitive functions but it does vary in severity.

When I was on Lupron + Abiraterone, it was pretty bad on most days but especially so in the 3 to 6 weeks following each Lupron injections. I frequently entered rooms and wondered why I went there in the first place. Reading was often difficult as I could not retain a paragraph I had just read a second before.

I do not think it is simply the absence of testosterone because when I took an ADT vacation in May of 2023, my testosterone came back around August 2023 and my cognitive functions and ability to write computer code at the level I used to be able to before treatment only returned to normal in January or February 2024, so many months later. But at least, the loss of cognition was not permanent.

Sadly I've had to resume ADT in June 2024 but this time around with Orgovyx + Xtandi. On those drugs it is not as intense so far. Some days my cognitive functions feel normal while at other times, it feels like I've gotten somewhat drunk and when that happens I dare not drive my car or make important decisions. And then it returns to normal hours later or the following day. But I do notice a gradual though slow degradation in my cognitive functions on this drug combo too. So a number of months from now, I will have to take another ADT vacation in order not to lose my job as I am only 56 and retirement in not in the cards.

Hope this helps. Best of luck to you!

Okay4now profile image
Okay4now in reply toMascouche

Thank you, and good luck to you and your job !

FRTHBST profile image
FRTHBST

I am 68 and was diagnosed almost 6 years ago. Until last year I avoided all ADT. PSA spiked suddenly to 288 over a period of about 5 months after failed immunotherapy, it had been hovering around 30 for a few years, but had risen to over 60, hence the immunotherapy). Had three rounds of LU-177 with Orgovyx for 7 months. PSA down to .09, but couldn't tolerate side effects of Orgovyx. I had lost sense of balance, every joint was stiff and sore, perception and thought was like looking at the world through a bowl of molasses. Been off it now for 7 months, joint soreness is better, cognition still not normal, but improved. PSA going up and another round of LU-177 coming up with doctor specifying Orgovyx again, says there is a synergy. Not sure what my decision will be. What choices we are faced with! Came across this article from last year. ascopubs.org/doi/10.1200/JC....

"Results: In a cohort of 627,025 men with prostate cancer, 73,933 patients (mean age of 70.8 years) received ADT and 57,005 patients (mean age of 70.4 years) did not. ADT exposure was associated with a diagnosis of dementia (Alzheimer’s disease, vascular dementia, or unspecified dementia); HR 1.6; 95% CI (1.49, 1.73). Subgroup analysis by dementia subtype is highlighted in (table). Compared to non-ADT group, exposure to ADT was associated with a statistically higher risk of dementia among whites (78.6% vs. 77.7%, P <0.001), whereas there was no significant difference among African Americans. The risk of dementia with different ADT regimens is shown. Conclusions: This is the largest real-world study describing the association between ADT and the risk of dementia, including over 600 thousand prostate cancer patients. The risk of dementia was significantly higher in patients on ADT, with a 60% increased risk. The highest risk was witnessed with GnRH antagonists (degarelix), with a 92% increased risk. Interestingly, the increased risk of dementia in ADT groups was observed only among whites but not in African Americans. Possible causes of this discrepancy include socioeconomic disparities, bias that resulted in underdiagnosis, or biological differences.

It appears there is nothing imaginary about "brain fog", a 60% + increased risk of dementia with ADT or an unknown risk of early death without ADT. We need other treatment options, hammering the nail of testosterone reduction for the past 80 years hasn't been the answer.

Okay4now profile image
Okay4now in reply toFRTHBST

60% !? Well said, thank you for sharing.

Doctorsceptic profile image
Doctorsceptic in reply toFRTHBST

I thoroughly agree. The article supports earlier scandanavian studies. As a retired doc, I am surprised that oncologists seem so unaware of this problem. Patients should be warned of this side effect.

dhccpa profile image
dhccpa

I get it but not from Lupron. I get it from regular cannabis usage. If I ease back, it seems to go away.

Kaliber profile image
Kaliber in reply todhccpa

lol 😂😂😂😂

NecessarilySo profile image
NecessarilySo

There IS a link between ADT and cognitive decline. I consider my Lupron injections as necessary undesirables. One thought I've had recently was that because testosterone is necessary for brain function, the problem of cognitive decline from ADT might be eliminated simply by eating foods that increase testosterone. Many common foods increase testosterone, like nuts. bananas, grapes, and eggs.

Doctorsceptic profile image
Doctorsceptic in reply toNecessarilySo

My comment would be twofold. One is that dietary sources would have a negligible effect. Also, if they did have an effect it would make it pointless to suppress your own testosterone .

To my mind the sooner oncology moves away from testosterone suppression or blockade the better.

NecessarilySo profile image
NecessarilySo in reply toDoctorsceptic

Let's say, just stretching the imagination, that since testosterone is necessary for cognitive function, ADT, in lowering testosterone, lowers brain function to some degree. But in my case, ADT does not bring T to zero. I seem to have a T reading of around 12 or so in spite of the ADT. But some more powerful attempts to lower testosterone might bring the T nearer to zero. By eating foods that increase testosterone, let's say we can bring our T up a bit to the 20-50 range. It could be that the "brain fog" some people complain about is due to near zero T levels and diet which limits T. Then the brain fog might be eliminated by eating more eggs or avacados or salmon or whatever. That's what I was thinking. But suppose the extra T from diet also causes metastasis growth. Then we have a choice: do we want to lose our cognitive function or lose our battle with prostate cancer?

Doctorsceptic profile image
Doctorsceptic in reply toNecessarilySo

Here is another thought. In the biosynthetic pathway to testosterone, the next molecule is oestrogen. So ADT also causes oestrogen deprivation.

Perhaps oestradiol patches (HRT) might help mitigate androgen loss - hot flashes, osteoporosis etc.- and maybe just maybe help the brain?? - while at same time help suppress PCa.

What do you reckon? Oestradiol is used in some patients…,

Eagleandme profile image
Eagleandme

Hi, "brain fog" for me is the sense that I'm not totally present in a room - it's a feeling that defies adequate explanation. Also, word-finding is a small issue for me. I also tend to fall asleep at the drop of a hat while reading or watching TV. To conteract this, I walk, go to the gym, take and process photos, and do mental exercises like math and meditation. I've stage 4 prostate cancer since 2019, going thru multiple chemo and radiation treatments. Now I'm on Lupron injections and zometa infusions every 90 days plus Xtandi.

Okay4now profile image
Okay4now in reply toEagleandme

"Not totally present" is exactly right.

GCMPD profile image
GCMPD

I'm a retired engineer with a strong background in mathematics. I've been on ADT for the better part of 9 years. In the first year, I lost the ability to do simple arithmetic in my head; it was quite disconcerting. Somewhere along the line, that condition improved. Along the way, I noticed significantly improved clarity when I was on ADT holidays so I do not think this was a function of aging. I no longer multitask well.

Okay4now profile image
Okay4now in reply toGCMPD

Thank you for sharing the specifics.

kiteND profile image
kiteND

I recall learning from somewhere -- I cannot remember the source -- that cognitive impairment from ADT is very much like the early stages of dementia, whether it be Alzheimer or vascular, but that it does not progress. Also, I have never heard of anyone developing ADT caused brain fog later in the treatment.

I suppose, then, that one way to determine if the brain fog is due to the ADT or aging issues is to ask a few questions. What age did you start ADT? Was it an age where the onset of age-related memory issues could have started? Did the brain fog start when you started ADT?Does the brain fog seem to be getting worse over time?

Okay4now profile image
Okay4now in reply tokiteND

Very good questions, thanks very much !

Worked_the_World profile image
Worked_the_World in reply tokiteND

Thank God for not progressing. See my post below.

Sagewiz profile image
Sagewiz

My symptoms include not being able to follow-through on a thought. I often forget what I was thinking or working on a momment ago. Like I can't keepo two thoughts in my head at once.

I have also had about 4 bouts of confusion where I suddenly became unfamiliar with my surroundings. Not that I didn't recognize them, but that I thought I was someplace else and had a moment of confusion.

Okay4now profile image
Okay4now in reply toSagewiz

I do that too, like pulling up to a stop sign, and wondering where I am. Fortunately, it's momentary, as you say. Unfortunately, I have always been like that!

Carlosbach profile image
Carlosbach in reply toSagewiz

I've had a couple times where I had a route planned in my head, and then had to detour. Instant confusion.

On one occassion I had to pull over and park until I could get the new route in my head. This in an area i have driven in for years.

When my wife and I discuss which restaurant we want to eat at, I often get stuck on the first restaurant named, and start driving to it instead of the one we finally decided on.

Sagewiz profile image
Sagewiz in reply toCarlosbach

I know the feeling. Places just get confused somehow.

fast_eddie profile image
fast_eddie in reply toSagewiz

I'm often scurrying this way and that. If I think of something I have to hurry up and attend to it else I will forget it. Sometimes I'll have to see if my toothbrush is damp to confirm that I've really brushed my teeth five minutes earlier. Small things, but concerning.

j-o-h-n profile image
j-o-h-n

I had to go back and read your post at least a half dozen times or was that six times? I forgot.

Good Luck, Good Health and Good Humor.

j-o-h-n

Okay4now profile image
Okay4now in reply toj-o-h-n

Thank you sir 😂

GAdrummer profile image
GAdrummer

My husband's first episode of brain fog occurred when participating in a PCa clinical trial. At the 3 week mark, he totally failed the standard neuro exam, lost his balance and wound up on his hands and knees on the exam room floor. He was immediately released from the trial (which later failed). Years later brain fog returned when he started chemotherapy. Lately the brain fog is due to circulatory problems associated with aging.

Okay4now profile image
Okay4now in reply toGAdrummer

Dear God...so sorry to hear that. He is fortunate that you are with him through it all.

Jpburns profile image
Jpburns

Brain fog, for me, manifests itself as an inability to remember words, particularly nouns. Especially proper nouns. My poor wife has to put up with me looking to her to complete my sentences. I’m very aware that it’s happening, and it would almost be funny if it wasn’t so annoying.

Okay4now profile image
Okay4now in reply toJpburns

I'm laughing - because I can totally relate! It's not like remembering the scientific name of a wildflower, just common, ordinary words. For me, the worst is people's names, especially last names. Thank you.

Carlosbach profile image
Carlosbach in reply toJpburns

Sounds like another comic is in the works...

Jpburns profile image
Jpburns in reply toCarlosbach

I’m trying to figure one out, but… brain fog.

I think I’m calling it “Afterlife.”

Carlosbach profile image
Carlosbach in reply toJpburns

IDK, Maybe focus on what we are willing to lose in order to continue to live. The list for many of us would be long.

Contrasting that idea with how many of us find joy and despite those losses.

Living Well While Losing

CAMPSOUPS profile image
CAMPSOUPS in reply toCarlosbach

Dont lose that thought. Good one.

Carlosbach profile image
Carlosbach in reply toCAMPSOUPS

Good to hear from you Camps. Hope you’re well

CAMPSOUPS profile image
CAMPSOUPS in reply toCarlosbach

Hey Carl R. Good to see you hear from you these days too.

I'm doing pretty darn good. Having the latest treatment taking the foot off the accelerator of the PC engine makes a difference for sure.

Yep la, la land for now. Then freak out when I start progressing again lol.

Kinda been the way its been these almost 5 years (end of October will be 5 years).

I'm Gumby. Bad balance. Borderline anemic. Lost 50 lbs of mostly muscle I didnt have to begin with ha. But no cancer pain at the moment but still walk funny and not far at all cause I can feel the damaged femurs at the hip socket. Doesn't hurt though except occasionally or if I aggravate them. Usually the first place to start hurting when I start progressing though so bastards must have made a nest there lol. I refer to femur/hip pain arriving as the Canary in the Coal Mine lol.

Wife and I took a drive to a local river Sunday to check out together. We've only been in the twin cities about 4 years so lots to explore. No plans to walk but parking was only bout 60 feet away from river so I ended up getting out and doing some walking. Felt good. Kinda drugged so lucy goosey rubber man walking along lol.

Brother you mentioned in this thread the what I call a hit in the gut you've been through this past year and I know... right. The old expression "had to pull myself up by my bootstraps" must have applied.

Love ya brother R

river park
Carlosbach profile image
Carlosbach in reply toCAMPSOUPS

Camps, glad to hear that you are in a good place for the present. I hope that lasts and lasts for you. Your response to your last treatment seems to be such a rare, positive, outcome. Congratulations.

Glad you got and enjoyed the river with your wife. Best news is that the canary let you use your Gumby walk to get down to the viewpoint without chirping at you too loudly.

Still pulling up on the bootstraps, but the loss doesn't dominate us as frequently. Trying to make the best of each day. I have a friend who told me years ago when I was struggling, "It's not as important the "what" that happened to you, as it is important what happens "in" you. We've all been through a lot, but how we represent those losses to ourselves makes all the difference. That's why I draw so much inspiration from this forum, people going through the shitz, and many of them still focusing on the positive, and living their new lives to the hilt.

Love ya back

TheLarch profile image
TheLarch in reply toJpburns

I started losing my nouns long before PC in my 40's. It's just gotten slightly worse on ADT. I just tell people that I've lost my nouns and don't worry I'll remember their name after I ask them about a 100 more times.

Kaliber profile image
Kaliber

this has been a great post ( was gonna do this last evening but literally just plain forgot lol. ) , and it illustrates a very common ADT experience that many - most of us have. We all pay a high price ( moobs, shrinkage , brain damage etc. ) for a little more time on earth , a bit more time with our loved ones. Some of us hopelessly hoping that the next great drug …. maybe cure will come along before it’s too late.

It’s a little comforting knowing that we aren’t going this alone , even tho we wouldn’t wish this mess on anyone. The sadness of “ all “ the brothers out there ….. just like us, it can be intense sometimes … can’t it ??

love you guys

❤️❤️❤️

Doctorsceptic profile image
Doctorsceptic in reply toKaliber

Well said Kaliber!👍👍

Kaliber profile image
Kaliber in reply toDoctorsceptic

❤️❤️❤️

Carlosbach profile image
Carlosbach in reply toKaliber

Kal, just like you i intended to reply yesterday, but I had left my brain in my other hat. Found it this morning, but not sure where I laid it.

Kaliber profile image
Kaliber in reply toCarlosbach

I hear you buddy, and it gets worse for us over time doesn’t it . lol. I guess I don’t mind tho, long as I still have enough cognitive functioning to appreciate that I’m still alive. Rotflol. Considering all the other issues ( bp, cardiac , bg etc ) plus the brain drain, that ADT brings over extended exposure …. staying alive a little bit longer doesn’t come cheap or easy. A little more precious life and QOL time with our loved ones is worth it to me…… so far …. It can wear pretty thin sometimes tho.

Well …. Starting off my Saturday morning in the Jacuzzi, then , in the house , immersed in a totally different reality ( Myst and Moss on my quest 3 VR ) and hanging with the brothers on the group …. I’m comfortable today … so far , it’s all good buddy. lol I hope your morning and whole day , even , is just as good my friend.

Love you lots

❤️❤️❤️

Carlosbach profile image
Carlosbach in reply toKaliber

Damn, the Jacuzzi, VR, Bruddah's, and comfort. You are living the dream today big man.

Chill day for me and the missus today. Lots of brain fog (I think of it like the Fog of War in the early World of Warcraft) for me this AM. Still life is good. Yeserday we made fried chicken, fresh asparagus, mac salad, and sun-brewed ice tea for dinner. Followed by homemade ice cream.

More than enough left for today's meal. Will visit our Japaneese Garden this afternoon. Enjoying the summer (my favorite season) while it is still here.

Kaliber profile image
Kaliber in reply toCarlosbach

Roger that buddy .. any day I’m not asleep on the couch for 14-16 hours is a better day too .lol doing “ stuff is good. Like your foodie fun you been having …. I’ve been making espresso , even drinking what seems like gallons of it here. Someone is, that is, and it’s not me lol. Discovered that a couple espresso beverages a day lowers my bg 50-80 points. Who knew , doesn’t mention it much when you look it up but it does for me. Homemade ice cream is delicious … love that. Been in a sherbet mood here myself too. It’s good to see you are out and about and QOLing. Gonna get out more , myself, when local temps drop below 105f lol.

It’s great to see you on the get go here buddy, its great to see you doing OK too. That’s the best we can hope for, hard to come by sometimes tho. lol.

Later buddy

❤️❤️❤️

Carlosbach profile image
Carlosbach in reply toKaliber

Yeah, the food stuffs great. Lots of menu items that recalls the summers of our childhood summers.

Tammy is big into making and consuming espresso's. She is diabetic, but we haven't noticed a corresponding drop in her bg. I'm more into sun-brewed ice tea. Thankfully my bladder has healed and I can drink it once again without standing over a urinal. On really hot days I enjoy an Arnie Palmer with limeade instead of lemonade. Only thing more refreshing is an ice cold beer.

As for the weather, it has cooled off in our area to low 80's. You might have to talk the Hammer into making a run up to Shaver Lake to find those kinda temps.

Surprisingly, being diagnosed with stage 4 cancer wasn't the worst thing to happen to me in the last four years. At times I'm kinda surprised that I am still standing, and actually enjoying my life. Have to say that you're one of my inspirations.

Thanks Kaliber.

Carlosbach profile image
Carlosbach in reply toKaliber

💙💙💙

Kaliber profile image
Kaliber in reply toCarlosbach

nothing wakes you up to enjoy life better than a death sentence from cancer , does it. 😂😂😂. Something both of could have lived without ( pun intended ). The high country is on fire here ….. seems like the entire forest sometimes. Lots of choking smoke from time to time and nearly as hot as down here. The coast , on the other hand is low 60s days and mid 50s night …. every day. lol No coasting for me, however … going to the coast “ triggers “ the hammer’s drinking urge ( from experience) ….. now that she’s quit booze , it would be cruel on her to make her go. It is what it is .. trying to evaluate new - different remote local resort experiences… instead. Thanx for the flowers buddy , I hope this coming week is a good one for you and your life partner. 🌺🌼🌹

❤️❤️❤️

CAMPSOUPS profile image
CAMPSOUPS in reply toKaliber

That says it well.

While I am looking good to my wife and feeling decent with my good Pluvicto results she repeats more often "I wish we could be like this forever". I think so many of us especially after the initial shock if we have had any decent survival time (I feel for the brothers that have a whirlwind of treatment failures and go out like a fuse) at least me, I feel just great to be present.

Carlosbach profile image
Carlosbach in reply toCAMPSOUPS

If I had felt like this when I was 20 I would have thought I was terminally ill. Wait, I am, and still life is worth living. In my reduced state I find a lot to love and appreciate

Okay4now profile image
Okay4now in reply toCarlosbach

I have very few actual routines that I do every day, but the main one is having my first cup of coffee outside every morning and just giving thanks for another day of life.

Carlosbach profile image
Carlosbach in reply toOkay4now

Good way to start the day

Kaliber profile image
Kaliber in reply toCarlosbach

Love it … maybe an espresso drink for me lol. We have to stop and smell the roses now, we’re kinda forced to do it … if we ever will. This is good.

❤️❤️❤️

CAMPSOUPS profile image
CAMPSOUPS in reply toOkay4now

👍👍☕

CAMPSOUPS profile image
CAMPSOUPS in reply toCarlosbach

Do we have extra sensory perception lol. I was thinking that when I was outside the house enjoying the evening earlier.

Yea was thinking how good I feel but 5 or 6 years ago I would have thought I was in serious health trouble.

I feel my mental state is weird. If my PSA isn't rising, or no pain increasing I live in la, la land maybe even during progression now that I think about it. How did I psych myself out so completely that I think everything will be alright in the end.

Carlosbach profile image
Carlosbach in reply toCAMPSOUPS

We had a celebration for my first two Cancerversaries, then quit. Now I pretty much only think of the cancer around lab, scan and treatment times.

I hate the SE’s, but somehow they are in a different compartment of my brain. Now i think about today, and about what’s planned for the week. Definitely don’t have cancer or the grim reaper in the forefront of my thoughts most days

Kaliber profile image
Kaliber in reply toCAMPSOUPS

It doesn’t take much looking around here to see those poor unfortunate brothers that go quick. Seems like there is too many of them. ( any is too many ) . It sounds like you feel pretty good daily , generally, that’s a blessing buddy. A blessing for both of you.

❤️❤️❤️

Carlosbach profile image
Carlosbach

Cognition issues have been a major SE for me since beginning Lupron and then on Eligard. They are a little less severe now that I have switched from 4-month doses of those products to monthly Firmagon.

I have a morning routine where I play simple games on my iPad to help me calibrate how clear or foggy my thinking is in the morning. Some days I whiz through and move on to more complex puzzles, and on other days I give up after a half-hour. On those days I am extra careful about which activities I plan for the day.

Also, I periodically have issues with my balance and have to move more deliberately.

Thanks for your post.

Worked_the_World profile image
Worked_the_World

Ah yes, the brain fog. Practitioners in the medical arena do not pay nearly enough attention to what some call cognition issues. Here is some of my personal experience. Note that I am 85.

Orgovyx was my first contributor. The fog started immediately. However, it was and is somewhat selective. It lowers my sensitivity to my environment. This increases reaction times.

Driving requires a conscious thought process. I.e. There is a car in my sights, Is it moving? Okay, what direction is it going? How do I react? Oh, I need to apply the brake. Which pedal is it? Press it now. Remember to use the signal lights.

Short term memory can be faulty. Upon walking from a room tro the next, I forgot what my target was. It often comes to me in a delay response, though.

I am a fiction writer and a pianist for my Sunday church services. My fog does not seem to affect my creativity all that much. I am slow getting to the authorship mode, but function creatively okay when I am there. My piano playing draws on a different part of my brain, according to my medical oncologist. I seems to function well.

The above is for Orgovyx. Now, for Tamsulosin for urinary issues after my SBRT in May. Even the prescription label warns about dizzy spells. Boy howdy, I would say so. The dizzy spells cause me to be unsteady on my feet. I have to walk and walk my dog very carefully.

Dizzy and fog make a wonderful combination. Still, these effects are about 2 on a scale of 10 and manageable. I do no intervention for either.

Physical exercise and mental exercise help a lot. Throw patience into the mix and I am doing pretty well.

My most significant other side effect is joint and muscle pain. Everything hurts but I have learned to live with it. I only occasionally take a Tylenol. Even more occasionally, I eat a CBN/CBD/THC gummy since they are legal in Colorado. I take one at bedtime so the additional haze of the THC occurs during the night. I have being fucked up. A couple of cups of coffee and a walk with the dog the next morning clear things up. Once in a while, I take a psilobin (magic mushroom) capsule. It in in a gray legal area here and I order it anonymously from a site in Seattle.

The above treatments help some with my third major side effect. That is depression. I often feel depressed, but just fight through it. No intervention is required here either.

I hope this excessively long post is of some help. Get back to me with any of your further questions. Remember, we are on the right side of the dirt.

Good luck. You can get through it is good shape.

Carlosbach profile image
Carlosbach in reply toWorked_the_World

Thanks WTW. I also use a 0-10 scale for my confusion and mood. It really helps me to be able to say I feel crazy this AM, but it's only a one on my scale. Before I got taken off of Elligard I sometimes was at an 8.

I'm often blue or depressed feeling in the morning, but I try to tell myslf that that mood is a know SE for me. The vast majority of the time my mood will improve once the morning yuck clears.

Sounds like you have a positive outlook for the most part which is both awesome and encouraging.

GAdrummer profile image
GAdrummer in reply toWorked_the_World

My husband wrote 18 novels after his PCa diagnosis. Due to the increasing brain fog, there will be no more. The editor and I had to really work on his last one to fix all the mistakes of grammar and unnecessary repetitions. Now he cannot spin a yarn because brain fog bugs have eaten the yarn into a pile of loose ends.

We have many miscommunications because when he cannot think of the word(s), he wants, he substitutes random words.

Okay4now profile image
Okay4now in reply toGAdrummer

I am sad to hear your story, but I am touched by the way you tell it. God bless you both.

Carlosbach profile image
Carlosbach in reply toGAdrummer

What a shame. For a writer to lose their words. My heartfelt sympathy for you both

Worked_the_World profile image
Worked_the_World

You bet, I have a positive attitude.

My medical oncologist, on June 7 and three days before my 85th birthday, that I could consider my prostate cancer in remission. I remain a bit skeptical due because of my age, but I will take it.

I have returned to my roots for the new life I have been given, and am going cowboy. I have new boots, jeans, western shirts, and a ten-gallon hat. I worked on a ranch but hustles way more bales of hay than cows. I have been bucked off horses, though.

Cowboy sounds better than bale boy.

See you on the trail, pard.

Carlosbach profile image
Carlosbach in reply toWorked_the_World

Happy Trails

FrostGyre profile image
FrostGyre

Get rid of the meds.

Eat nothing but fatty meat. Drink nothing but water. Your body will switch from using dirty, inflammation-causing sugar/carbohydrates as its fuel source, to clean ketones (created from fat).

Your cancer will improve/disappear (because the prostate is no longer inflamed), and your memory will also improve due to the ketones that the brain (and heart) loves (and, of course, not taking the meds).

That is all. 👍

Jpburns profile image
Jpburns in reply toFrostGyre

Errr… that’s not good medical advice. As bad as this thing is, giving up or going with quack remedies is not the answer. Follow the science.

FrostGyre profile image
FrostGyre in reply toJpburns

Who said anything about giving up?

Quack remedies? Disease is caused by diet, and to a lesser extent, lifestyle. How does poisoning (whether through fake food or medical quackery) eradicate disease?

How can the original human diet be a quack remedy?

Ah, yes... Science.

Jpburns profile image
Jpburns in reply toFrostGyre

Disease is not caused by diet. Some of it is genetic. Some of it is environmental. And yes, some of it could be exacerbated by bad dietary habits (like a fatty diet).

Please don’t pretend your opinion is a replacement for years of scientific study.

CAMPSOUPS profile image
CAMPSOUPS in reply toJpburns

thanks for some sanity.

SteveTheJ profile image
SteveTheJ

63 yo with stage 4 diagnosis April 2020. Definitely some memory issues but when I compare myself with others about my age, I don't see an issue. I remember most everything, it takes me longer. Every single day there is a time when I feel like I'm not really here; it's strange. Sometimes it's difficult to plan anything to do analyze a problem at work. But it's temporary.

Sure I wish everything was the same but it isn't. I have cancer and the medications are the best way to keep it under control.

I've been taking Provigil most every day for 2 years or so; ask your oncologist.

Okay4now profile image
Okay4now in reply toSteveTheJ

Steve, as far as I can tell, Provigil is for sleep disorders, but maybe it's an off label kind of thing for you. Whatever the case, I'm glad it works for you.

SteveTheJ profile image
SteveTheJ in reply toOkay4now

Not really. The description usually says for narcolepsy but it's for anyone who has problems with alertness. My understanding is it replaced methamphetamine for long-haul bomber pilots in or after WWII. It helps a lot with afternoon brain fog and fatigue.

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