Cognition issues

[JolleySprings]

Any suggestions for help regarding memory issues etc as a result of ADT ???

[MoonRocket]

Sleep and Exercise.

[JolleySprings in reply to MoonRocket]

He does that Faithfully. Avid Pickleball player and Cyclist. Also works full time as Dean of Business School after 47 years in Corporate Healthcare Administration. It kills me to see this “machine/multi-tasker” go-get-er man forgetting to wear a belt or not being able to find his keys etc! It seems to be negatively progressing quickly!😩

[joeguy in reply to JolleySprings]

Some ADT drugs are much worse than others with regard to cognitive issues. The combination of Firmagon and Xtandi turned me into mental zombie. Cognitive issues improved by switching to Orgovyx and Nubeqa, but once you add in chemo to the mix, things go south again....

[Derf4223 in reply to JolleySprings]

Resistance exercise is mandatory. He might try HMB supplements for mental acuity/energy. As for forgetfulness, I can tell you as someone with aggressive APCa that a lot of mental energy goes into dealing with side effects, doctors, and the stress of a very big dark cloud over you.

[spencoid2 in reply to JolleySprings]

I has severe memory issues when first starting ADT. I could start a walk across the room with some sort of intention and by the time I got there had absolutely no idea what I intended to do. It was really tough making me think that life this way was not worth living. I have no idea why but this all passed and I am pretty much back to normal. Now what were we talking about Seriously I did get orchiectomy and stopped ADT but as far as I know the side effects are not that different. Give it some time, keep up the exercise and try to not overthink things and see where it goes. Hopefully it will be like it was for me. I am writing complicated computer programs and doing all that I enjoy doing. I have no idea what made the change other than maybe a conscious decision to just deal with it !!! I had to make similar decisions re hot flashes, no libido, tiny dick and other things that are just part of what I am now.

[jbskiatook in reply to spencoid2]

Tall Allen said to get a pump for tiny pecker problems. I had a PPI right after my testicles were removed. I pump it up atleast once a week and that has worked.

[GoBucks]

My Mo suggested an online memory type game. Seriously though, I can't remember the name. I play Wordle, quordle, connections and waffle daily. I think they help. I also kept a journal/tally of my blunders. My favorite entry: "did some stupid things but forgot to write them down". As scary as this is I think I need laughter in my life, hence my commentary. Seek the advice of his Docs. I 2nd the exercise-it always made/makes my days better.

[Huzzah1]

Last night my wife made tacos for dinner. The shells were filled with the meat and she had lettuce, avocado and salsa out. At one point I looked at the avocado plate and asked if we had anymore cucumbers. It's that type of stuff that happens with me. memory is fine. I do work out a lot.

[pakb in reply to Huzzah1]

This is the type of thing that happens to my husband. He'll use incorrect words. Other than that his memory etc seems fine. That's been happening for a few years. 6.5 years of ADT.

[alephnull]

I told my PCP about it, as my job as a Programmer/Analyst requires me to freaking think.

He immediately prescribed Adderal.

It has worked wonders for me. It helped some for memory, but a lot for focus and logical thinking. I know longer have foggy days.

[SteveTheJ in reply to alephnull]

Provigil is another good choice, esp. for fatigue.

[pakb in reply to alephnull]

Haven't heard of adding Adderall. One to look into. Thank you!

[Fritz711 in reply to pakb]

Ritalin works for me but need to check with cardiology

[JolleySprings]

yes!!! Adderall is a Miracle for my Steve! It gives him the energy to go to work and EXERCISE…. But the memory issue is so worrisome for him. Everyone he works with knows his situation, so we just try and laugh about it and keep going!

[lookingforamiracle]

I found when I started a low dose (0.1 mg) estradiol patch that not only did hot flashes stop, but my mood also stabilized, I slept better, and much of the brain fog cleared. My "amusing" wife would call me "loopy" that first year on Lupron before I started the estradiol. I am back to my customary occassional dumb or forgetful tricks, but it is much better than that first year.

[Anthonyve]

Hi,

I had similar problems.

Once I forced myself to get back into weight bearing exercises, over time, they seemed to disappear.

I know coincidence is not causation, so I can’t say for sure the one led to the other, but I both think and feel that that is the case.

Cheers,

Anthony

[hopefull99]

I find that I am a little slower mentally and my mental stamina is certainly reduced.

I exercise 3 times a week and that makes me feel good and sharper... so exercise seems to be good both for mental accuity and physical wellness.

Fortunately I am retired and don't have any streneous mental tasks required of me.

[Nusch]

Can recommend a package, which works very well for me: plant based diet plus fish, exercise (weight lifting and jogging), sleep and meditation. I’m also reading a lot and learning a foreign language.

[Jazzman2023 in reply to Nusch]

Thanks for the post ! Just curious, how are you learning a foreign language ? Do you have a particular foreign language app that you are using ? Thanks !!!

[Nusch in reply to Jazzman2023]

I‘m learning Croatian. I have books and audios, but best learning was face2face, either in person or via the internet. If you search the net you find platforms offering teachers for all languages. It’s tough, especially as we are getting older, but it’s fruitful and it motivates as you are getting better.

[Jazzman2023 in reply to Nusch]

Thanks !!

[SViking]

I was advised to restore mental clarity and climb out of the brain fog, to learn to play an unfamiliar musical instrument, learn an unfamiliar new language, or study, advanced mathematics.

I’ve never played a musical instrument, so I bought a Yamaha electric piano online and started teaching myself to play. Then a few weeks later I started climbing out of the fog. Miraculous.

[London441]

The suggestions to lift weights are the best ones. Pickleball and cycling are great but does he lift? It is the most effective antidote to all ADT issues.

I hope he is getting good sleep. Adderall obviously provides an energy boost, but all amphetamines come with a price.

He’s also getting older, even more obvious I know. But ADT is an aging accelerator across the board, and every older person I know is either losing parts of their memory or is in denial about it.

Really can’t recommend lifting enough. Without specific intervention, ADT wastes muscles relentlessly, and aerobic exercise alone will not prevent it. Great luck to you!

[Eadgbe]

It may be difficult to determine if memory issues are due to age, ADT, or the amount of new information that is required to deal with this PC domain. The issue of short-term memory storage/recall is not necessarily due to any ADT reason. The older I get the less I am able to store an intent - which makes me move to a direction - and recall what the intent was. Eventually the intent is remembered. That is a recall issue. If the intent is not remembered, that is a storage issue. This has to do with what the cognitive environment was when the intent was formed. If I am in the middle of a task and am interrupted by another, the new task may not have the salience to form a functional memory because its transitory and not meaningful - my mind is on the 1st task.

The "lost keys" syndrome is, I believe, age related. We are less aware of our what our hands and fingertips are doing because they don't require concentration or focus - they work unconsciously. I know of no one of age 50 and above who doesn't experience this. So when we put something down, while thinking about other things at the same time, we don't store that memory unless we paint it with several senses (eyes, sound, vision).

There is a book, "The 7 Sins of Memory" which is an interesting read. Recent advances in learning theory illustrate how memories are made (less about they are recalled).

I cannot help but think that the less we are aware of our environment - inner and outer - the more memory issues seem to arise. Of course, if we are not sleeping sufficiently and the less that mundane things have meaning due to this terminal illness we face, that adds a burden to all our thoughts and hinders our memory storage/recall. We do have limited hard drive space.

Despite ADT, I think memory can improve with the assumption of meaningful direction in ones life. But I am early in this journey so I have a lot to learn.

[MateoBeach]

Yes Jolly Springs. I have been there and have researched it well. I have a few suggestions for you. First of all, get LOTS of exercise outdoors, especially in nature. Walk, hike, run or bike. And keep your brain active (I read cancer related research). Or take online courses (EdX). And interact with others live.

Estradiol Patches supports brain and spinal nerve functions as well as helping with bone health. 0.035 or 0.025 per day biweekly patches should be sufficient. Requires prescription.

A curcumin supplement that has been shown to help Mild Cognitive Impairment Theree are two that have shown good bioavailability to the brain. (Not most curcumin supplements) These are Longvida / CurcuBrain (lipidized) and Theracurmin (micronized). Either is effective. The Longvida might be slightly better.

Manesium-l-Threonate (Mag-T) is the only Magnesium supplement that delivers Mg across the blood-brain barrier. Two caps per day oof Mag-T. Paul/MB

[JolleySprings in reply to MateoBeach]

Thank you for this response!!! From your research, are there any Hazardous side effects pertaining to Prostate cancer in taking the estradiol???

[MateoBeach in reply to JolleySprings]

There are conflicting opinions about estradiol in PCa. The estrogen receptors ERa and ERb have different roles and are regulated in their expression through complex pathways. That said, Estradiol via patches has been shown to be an effective alternative form of ADT, stopping androgen driven cancer growth similar to Lupron, etc. And does so with good safety as shown in the PATCH trial. So using it as a low dose adjunct on top of ADT drugs appears safe and beneficial. However, in very advanced cancer the androgen receptors can sometimes mutate to be stimulated by other hormones other than testosterone and DHT. This also happens with the "lutamide" ARSI drugs. A friend can turn against you. So if one is doing fine and using estradiol (or an ARSI) and then PSA starts to climb. Then one should stop these and see if the PSA comes back down. Cancer is always looking to mutate to get around any treatment that is maintained continuously.

[85745]

regarding memory issues, yes. Do math equations put the calculator away . Write it down as you think of things to do. writing helps with memory. Do activities that require mental focus . Read and then recite For me I do Traditional archery and read memerize bible verses. Some do cross word puzzles, scrabble, monopoly games, etc. Limit cable time no good for the body and mind ( wave length frequency signaling used ). P/U a book instead . There are some herbs that help I think Ginkgo is one, but a quick search will get you there. Best

[icanwintwice]

Erleada is the worst. sometimes I can't talk. Leave syllables out of words I try to enunciate. can't remember names. its been 18 months of Lupron and Erleada. Def getting worse. I did back off to 180 miligrams from 240 and it seemed to make a difference. Maybe see if they will lessen the dosage a touch. The Adderal option seems like a real possibility!

[Shamrock46]

My husband started having long/short term memory lapses while on Lupron/Xtandi last year. His other SEs were also getting much worse while his PSA was doubling/tripling, showing his 2nd recurrence. MO said Lupron causes memory problems and wanted to cut dose, but it's all about the absence of testosterone. He stopped all treatment and is now receiving palliative care. He decided he didn't want to lose his memories because once they're lost, you don't get them back. Once in a while he'll be unable to recall something that happened in the past, but other than that, short term is fine and he's much improved. Our journey included many decisions about what good ADT did compared to how much damage and I think it's a matter of what each person is willing to tolerate.

[Nfler in reply to Shamrock46]

Shamrock ☘️ I started taking ivermectin n cbd oil when I got off Adt and my psa has been declining ever since 9️⃣ months n counting. Just a thought… good luck 🍀

[Shamrock46 in reply to Nfler]

Thanks for taking the time to offer your suggestion. Unfortunately, the ADT made my husband's CHF worse and there's not much more to be done at this point except enjoy each day as it comes. At least he still can enjoy an occasional beer and even made himself a highball on New Year's Eve! Glad you found something that helps you and hope it keeps working! Carpe diem!

[Nfler in reply to Shamrock46]

You know another option is the bat therapy, where they give him high doses of testosterone which will make him feel a lot better but also the ivermectin is as safe as taking aspirin n could possibly kill the cancer ♋️, explore all your options if u can… good luck 🍀

[JolleySprings in reply to Nfler]

Yes! I’ve read a lot about BAT. Because of his rare CDK12 mutation, it’s pretty risky to try some options. However, it isn’t off the table for us! Thank you very much for the suggestion.

[Nfler in reply to JolleySprings]

Yes I know it’s scary but you guys don’t have much to lose as the cdk12 mutes don’t seem to b affected by high doses of t, the contrar usually happens. If u read up on it cancer cells are saturated at 300 ng and anything above that tends to kill the cells, it’s def worth a shot. And I wouldn’t underestimate what ivermectin will do to the cdk12 mutations along w cbd, most studies show it will cause apoptosis ( killing Of the cell). Good luck and don’t be afraid to experiment at this stage…😁

[Cygnus52]

Check out the MIND study, NIH, Vanderbilt and USC. Nicotine patch. go to mindstudy.org

[j-o-h-n]

So I said to my neighbor. Mary I thought I had a technique on how to beat my memory loss. All I do is sing to myself. So Mary, here is an example of what I mean. I needed to get a broom from down in my basement. So as I start down the stairs I sing to myself "Gotta get the broom, Gotta get the broom and etc. all the way down the basement stairs. Sure enough I notice something else in the basement which needed attention, so when I go back upstairs I forgot to bring up the broom.

So Mary says to me: At least you didn't forget the lyrics........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/05/2024 8:50 PM EST

[BrentW]

I took up watercolour painting, learning from scratch (I have posted some of my paintings here because I find feedback, especially when nice, encourages me). I am also continuing with research, though that is a trial so I am not doing as much as I did. Nor am I looking to publish any more than I already have. After all, one more paper on microscopic shelled amoebae will not, I am sure, change the world.

Whatever I do is self-motivated, as I feel that that would encourage me more than would anything by way of a prescribed course. I am not being snobby there (I hope); it's just that, going right back to my early education, I have always learned best when allowed to teach myself. I am a member of a group of like-minded researchers (The Cushman Foundation for Foraminiferal Research) and have made a friend or two within it. I find their encouragement helps.

Regarding the physical side of treatment, I am doing far too little. The posts here remind me that I really should get back on the treadmill, even if only for a few minutes daily. How to cope with the boredom associated with that?

Upland central Wales in indigo -- my favourite colour.

[Nfler]

Not only memory but my whole well being in general was so compromised that it would’ve killed me had I continued past the six months of ADT that I did. I researched pub med and nih articles non stop till I came across this article on ivermectin possibly being repurposed as an anti cancer ♋️ drug. It has been around since 1987 and the Japanese scientist/doctor that discovered it won a Nobel prize for saving millions of people from parasites 🦠, which is now what’s thought to trigger cancer ♋️ cells, so I decided to go that route n am so Happy I did, not too mention my memory n health has returned…😁

[Jewelrylady]

I would recommend that you proofread any important forms or questionnaires your husband fills out. I noticed my husband was making mistakes (ex: dosage of medication; when treatment received; spelling errors). I’ve started proofreading anything that is important. I’m worried about tax time because he’s always done our taxes and I don’t have a clue! Guess I’m going to learn!