Forgetfulness on ADT: Are there any... - Advanced Prostate...

Advanced Prostate Cancer

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Forgetfulness on ADT

LDC2024 profile image
41 Replies

Are there any ways to help with the side effect of forgetfulness / mild cognitive impairment while on ADT? My Dad (stage 4 PC) started on ADT 2 only months ago, but there have been a few moments of mild cognitive impairment since starting - forgetting shopping list, trying to return stuff at the wrong store…he’s usually very on the ball. Of course the anxiety of a new and unexpected diagnosis also doesn’t help I’m sure. But anything that can help with brain fog/forgetfulness on ADT? Or is that just a SE he lives with?

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LDC2024 profile image
LDC2024
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Justfor_ profile image
Justfor_

Have a look at my resposes to user Tinkudi here:

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JohnInTheMiddle profile image
JohnInTheMiddle

I'm in Canada. Stage 4 metastasis. High volume. 10 years younger than your dad. Now 2 years successful treatment. Back at work but dealing with ongoing fatigue.

So far so good - one always dreads the appearance of resistance.

My question is what ADT is your dad on?

There is a difference between Lupron and Firmagon. Lupron much more widely prescribed. For reasons related to my diagnosis I was prescribed the second. I believe this was very fortunate. They are different technologies. My own naive view is that Firmagon isn't as bad for brain fog and forgetfulness. Also I take methylphenidate also known as Ritalin.

Here's a post on the topic comparing the different kinds of ADT:

healthunlocked.com/advanced...

LDC2024 profile image
LDC2024 in reply toJohnInTheMiddle

Thanks so much for sharing - I’m going to see what ADT he is on. I don’t recall it being Lupron, but I could be wrong. He’s being treated at Credit Valley (live in Oakville) because wait time for Princess Margaret was going to be over three months before starting anything. Sounds like your treatment is going well and I’m wishing you more years of health ahead!! Thanks again.

Big_Mcc profile image
Big_Mcc in reply toJohnInTheMiddle

Hi. I assume you take ritalin for your fatigue. Can I ask does it work well, is it worth taking? I believe it can be addictive. What is your ritalin dosage and protocol? Any side effects?

JohnInTheMiddle profile image
JohnInTheMiddle in reply toBig_Mcc

I take 10 mg methylphenidate, also known as Ritalin, when I get up on an empty stomach with my Abiraterone. Have no stomach problems. Have not found anything to say that there's a problem of taking it with Abi. I take a second dose actually with breakfast. And if I have meetings in the afternoon I might take a third dose middle of the day.

It probably puts up my blood pressure. I need to check it because I've been too tired to check it for a while.

I do not have the slightest sense of being addicted to it. When I had a lot of pain 2 years ago I was on hydromorphone and that made a huge difference. And then because the therapies were suppressing the masses I realized that I needed it less and less and then I just stopped.

I drink a coffee after that. And I drink three cups of coffee a day and two cups of green tea. Usually nothing after 5:00 p.m. . I do melatonin before sleep just by the way - not only for sleep but there's some evidence that it has anti-progression properties. (Although not the evidence that Mr T. would prefer 😃.)

I used to be doing a lot of exercise up until about 2 months ago, both resistance and aerobic. And I was trying to work in isometric which I've been reading about. But I've started at halftime but demanding job. And I do a lot of sleeping on the weekend. And the most important thing for me is to exercise again.

The people who prescribe the methylphenidate to me are the palliative care people. I'm not so enthusiastic about the fact that I have a relationship with palliative care people.

Until I started work as I told my wife I just feel normal and healthy. With a normal amount of energy for a person in their late 60s. But now starting work I'm experiencing a lot of fatigue.

I have not done an AB test that is to say stopping to take Ritalin and seeing the result. But my sense of this is that overall it is helpful in just making me more normal. I'm able to just work intensively as a normal person. And then like a normal person I get tired after a while.

Eagle52 profile image
Eagle52 in reply toBig_Mcc

yes, I recently started 5 mg per day and it definitely helps. There are days I forget to take it and survived. It’s a little pick me up and I stick to 5 mg. The first day or two I was a little jumpy but then it was fine

mrscruffy profile image
mrscruffy

I have eliminated by doing tons of brain puzzles, crosswords etc. Pretty much a non-issue now for me

LDC2024 profile image
LDC2024 in reply tomrscruffy

That’s awesome - thank you. Looks like I’ll be buying him sudoku and crosswords :)

Rocketman1960 profile image
Rocketman1960 in reply tomrscruffy

lPull out the chess board! Check Mate.

Tall_Allen profile image
Tall_Allen

There is a clinical trial at MD Anderson to see whether ritalin or exercise or both is better at maintaining alertness.

classic.clinicaltrials.gov/...

LDC2024 profile image
LDC2024 in reply toTall_Allen

Thanks so much - I will look into this.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toTall_Allen

Just the fact that the question has been asked is great! My answer is "both"! For a while doing both as I told my wife "I just feel like a normal person".

Miccoman profile image
Miccoman in reply toTall_Allen

TA, when I saw this thread I wondered if this is an ADT side effect that might be helped by estrogen? I have a friend who has this problem as well and I'm hoping to find something to help him. He is resistant to an orchiectomy, which was my solution. He is already on ritalin.

Tall_Allen profile image
Tall_Allen in reply toMiccoman

Why do you think that adding estrogen would help with his brain fog? It might, but I am not aware of such a benefit. Maybe ask Wassersug .

Miccoman profile image
Miccoman in reply toTall_Allen

Just an off the wall thought that if estrogen lessens hot flashes maybe it works on other SEs as well, and I knew you'd be the one to know.

lowT163 profile image
lowT163 in reply toTall_Allen

Far better for me has been phentermine at 37mg and weight loss from activity. I think weight gain while on adt is the killer of energy. I’ve lost 20 pounds and feel much better. 20 to go.

ARIES29 profile image
ARIES29

Brain fog is something we all here will suffer from at some stage. I found Firmagon to have the least SE & exercise is always helpful.

Also Magnesium L-Threonate is a big help for me.

binati profile image
binati

I agree that Firmagon has very few side effects. Mostly loss of stamina, muscle mass and hot flashes. Did not feel any brain fog. I haven't taken Lupron so have no frame of reference. Post Firmagon I had an Orchidectomy and have been on Darolutamide for 1.4 years. Loss of memory is normal and usually age related so I guess brain fog is much more compounded effect.

London441 profile image
London441

How much does he exercise and what kind? It is the most effective antidote.

BruceSF profile image
BruceSF

i drink a cup of ginseng tea every day, which is grown in Wisconsin. Apparently the soil and climate in Wisconsin are perfect for growing this species, panax. I heard about it from Mark Moyad at a PCRI conference a few years ago. It has really worked to ‘clear the fog’ for me and several others in a PCa support group that I’m in.

Doctorsceptic profile image
Doctorsceptic

I dont think so. The literature describes increased risk of dementia and other brain problems with ADT. I had the same problem plus my visuo- spatial awareness was affected. Wife started complaining about my driving too close to curb and I ended up clipping a parked car. I stopped the drugs but it took probably a good 2-3 months before I was fully better. I also had an appalling episode of catastrophic headache on enzalutamide. I had warning signs of increasing headaches over a few weeks which I ignored and was not warned about. Culminated in hospital admission - probable PRES (posterior reversible encephalopathy syndrome). BUT not always reversible and can cause cerebral bleed/stroke.

I am 78, PET +ve bone mets and decided medication made little or no difference at my age to longevity so stopped all the meds. I chose quality over quantity of life.

Doctorsceptic profile image
Doctorsceptic

I forgot to mention that the headache episode also included severe hypertension systolic 190 which is a feature of PRES.

MarkBC profile image
MarkBC

I'm also from Canada (Victoria BC). I have certainly been impacted by brain fog from six years of ADT. I get easily frustrated by difficult problems and can no longer multi-task. My oncologist says it's difficult to tell how much comes from the ADT and how much comes from aging. I just accept the ADT side effects and adjust my life accordingly. For example, I retired early from a job that required high cognitive ability. I am fortunate to be surrounded by people who know about my condition, love me, and help me out when necessary.

85745 profile image
85745

Look into Lion's Mane Mushrooms and Ginkgo Biloba

Tommyj2 profile image
Tommyj2 in reply to85745

This is likely to be another of those topics where there will be as many “cures” prof erred as men suggesting them….. so far I’m putting my money on Ritalin and or exercise.

85745 profile image
85745 in reply toTommyj2

Myself I would rather take a one time majic mushroom trip and open the mind up, before considering Ritalin. lol No claims being suggested

EdBar profile image
EdBar

I try to read a lot , and do things that cause me to focus and learn about something, for me it’s been a fish keeping hobby that involves a lot of chemistry and biological processes to learn about. Some doctors will also prescribe Ritalin to help with fatigue and brain fog.

Ed

HotRod4321 profile image
HotRod4321

Going on 3 years of ADT (Androgen Deprivation Therapy). And noting this replay to you from 85745 (above) (1 Hour ago) = Look into Lion's Mane Mushrooms and Ginkgo Biloba

Ginkgo = did nothing for me

Lion's Mane Mushroom Powder (Amazon) = cracked open a window for me. A small breeze is now coming into my room after only a few days of 1 teaspoon in my coffee twice daily.

Godspeed in your search....

SViking profile image
SViking

It almost goes without saying these days that as much intense exercise as he can stand is Paramount for most ADT side effects. However, for the brain fog, I was advised to study a foreign language, learn to play a musical instrument or study foreign language. I bought an electric piano and started teaching myself to play from Internet lessons. The results were astounding for clearing the brain fog. Smarter guys than me on here can explain why that works, all I know it was a miraculous transformation. A schoolteacher friend of mine told me that even with preschool children when they teach them music or math stimulates something extra in their brain.

icanwintwice profile image
icanwintwice

I don't know too many people on here who haven't experienced what you are going through. Look forward to seeing the results from the MD Anderson clinical trial. I do lots of puzzles and try not to get too stressed. Work out as much as possible. And I have finished my dosage recently. Hopeing that I get MY BRAIN back!!!

kiteND profile image
kiteND

Ritalin helps me. It, of course, has its own side effects.

SteveTheJ profile image
SteveTheJ

Consider talking to your oncologist about Provigil. Over the last 2 years it has helped me with brain fog and fatigue. No one thing is responsible for "forgetfulness" of course. I know in the 4 years since my diagnosis my brain has probably dimmed a bit on its own. Best of luck.

Ian996 profile image
Ian996

I have been taking Zoladex for 4 years I have metastatic castrate resistant PC

I had an insightful response to your question but I forgot

Billy_Boe profile image
Billy_Boe

I had stage IV PC and was on ADT for two years. My MO "insisted" I exercise everyday to help with the side effects, and I found this helpful. Fatigue and impairment are common, but exercise seemed to help a bit.

Derf4223 profile image
Derf4223 in reply toBilly_Boe

You HU bio seems to be devoid of case details -- gleason, scans, PSA's, treatment arc, etc. Your MO sounds like the real deal. It also sounds like you are post-ADT now. When did ADT stop? Have the side effects cleared up?

mababa profile image
mababa

LDC2024, if your dad is having only "mild" cognitive issues at his age, he's doing well in my estimation, as a 72-year-old myself. Unless the SEs are debilitating, ADT alone is rough enough and doesn't beg for the addition of more chemicals in one's body. While this should be self-evident, my MO affirmed it. I agree with the many responses to your post citing the need for increased brain stimulation as the best mitigator for brain fog, Likened to a muscle itself, the brain benefits from exercise. (BTW, I would suggest frequent conversation as one of the best forms of brain exercise.) I'm starting my 4th month on Orgovyx and can attest to brain fog as a notable SE. One peculiar and concerning aspect of my brain fog is my newly acquired tendency to drop things, actually forgetting that something is in my hand. I'm having to apply greater focus/attention to all of my actions. Makes me hesitant to remount my motorcycle and go blazing into any of those wide, curvaceous sweepers endemic to the North Cascade Mountain passes near which I live. At high speed, they require precise entry and exit points--or else.

One SE my MO is concerned about is my increased blood pressure. It has risen to a steady 168/80. I believe it's triggering mild dizziness and persistent "heart pounding." Although hesitant, she may decide on adding a remedy to the mix on my next checkup.

Best wishes for your dad's continued efforts in treating SEs from ADT.

lowT163 profile image
lowT163

what was the question again??

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

My thoughts are that

Good Luck, Good Health and Good Humor.

j-o-h-n

tayninhtom profile image
tayninhtom

Brain fog lifts when following a microdosing regimen of psylosibyn mushrooms. Google it.

fast_eddie profile image
fast_eddie in reply totayninhtom

Do you grow your own? I may give that a go. I am interested in those shrooms.

tayninhtom profile image
tayninhtom in reply tofast_eddie

No, we purchase from legal Oregon grower, Paul Stamets.

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