Hey guys, everyone has been truly helpful on this site I keep posting as I endure my 18-24 months of hormone therapy that I have remaining. The last leg based on the Stampede Trial. I started on Lupron and Zytiga after successful radiation to my lymph node. This was seven years after proton radiation to my prostate. No recurrence in my prostate. I did my first Lupron Shot and 3 months later got on Zytiga. It only took three months and the Zytiga trashed my liver. I segued over to Erleada. It has worked well. I am on my 12th month with 5 months to go but the BRAIN FOG is becoming obvious in my speech and my memory.
First, I would hope it is the Erleada and not Alzheimers as my family has a history of that disease. I am double APOE4 positive. Is anyone else suffering from severe brain fog with ERLEADA?
Im wondering if they're are any substitutes other than Zytiga for Erleada?
almost through with this.....thanks for relevant input.
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icanwintwice
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I won't advise you on alternatives. I think that's a question for your Oncologist as he/she would have your history but others here will tell you what's available.
As far as Erleada, I moved off it because it is contraindicated in my multiple Myeloma treatment. I'm still castrate sensitive and am on aberaterone now.
I had a very difficult time on Elreada. I felt like I was outside my body watching myself. I'm sure that doesn't make sense to many guys here but it's the best way I can describe it.
I would lose track of what I was saying mid sentence. I forgot words, simple everyday words. Just really hard to deal with it. Frankly, even if the drug wasn't contraindicated, I would have asked for an alternative.
Had the exact same reaction(s) to Gabapentin! Was to teach a class at a university. Stood in front of the class and couldn’t remember why I was there. Making it ironic, it was at the university’s Medical School, for doctors and ancillary staff!
Dropped Gabapentin immediately after that fiasco. Wonder what that might mean to having PCa treatments in a while?
You can try Nubeqa if your insurance will approve it. I'm not sure its any better, but it doesn't activate GABAA receptors, so it might be. Worth a try if your MO is willing to fight for it.
As I'm telling another fantastically interesting tale to friends, my wife will interrupt and I just can't remember where to restart, and I mistake the laughter on my friends faces for joy as opposed to the relief that I have been stopped from telling the same thing I told them a day or so ago. I have given up trying to remember anyone's names at social events, especially the ones I have only recently met and just say "I can't remember your name, but it's nice to see you". But, all my blood levels have remained the same, as I enter my fourth year and I still can hear the MO saying "you likely have a 25% chance of living 5 years", so really I'll accept the fog and the gentle acceptance from the good friends that I have.
I experienced the same brain fog on Xtandi, which I am told is a similar drug to Erleada. I am off of Xtandi now due to the problems it was causing with my heart. Now that I am off Xtandi, the brain fog has lifted, per my wife!
yes, Erleada gave me a bit of brain fog, but I wasn’t sure whether it was because of brain, surgery and radiation. I started a regimen, put out by Paul Stamets, the mushroom King. I began micro dosing, psilocybin mushrooms 4 days a week. three days off. It cleared the head up. I continue the micro dosing regimen and seem to be as sharp as ever.
Ask your oncologist about Provigil. It's helped me a lot for 2+ years. Also get as much exercise as you can and keep your brain active by always having some things to do.
Switching to Nubequa (darolutamide) can have much less brain fog SEs as it does not cross the blood brain barrier. I posted about three possible interventions to help with treatment related and age related mild cognitive impairment. That post is in the Fight Prostate Cancer group, not here. The three are low-dose estradiol patches, Theracurmin or Longvida forms of curcumin (not the ordinary ones), and Magnesium-l-Threonate. The last two being OTC supplements. Theracurmin may be particularly interesting for your high risk of Alzheimenrs.
Memory and Brain Amyloid and Tau Effects of a Bioavailable Form of Curcumin in Non-Demented Adults: A Double-Blind, Placebo-Controlled 18-Month Trial
with 4 pills (240mg.) of Erleada I had a bad case of Vertigo when lying down to sleep. Changed dosage to 3 pills(180mg.) Vertigo went away. 3 years ago. The Lupron and Erleada most definitely creates a problem, Fog, memory , speech. Cancer is still <.01
You might check with your MO about reducing the dosage of Erleada. After about 4 months of Erleada, I developed a rash over most of my body (that really concerned the radiation techs during my proton radiation). At the end of my radiation treatments, my doctor suggested going off the Erleada for a couple of days and resuming at 1/2 the "recommended" dose since there have been no studies related to dosage. Rash went away and PSA still undetectable 11 months later (still taking Orgovyx too). I do still experience problems with word recall and some brain fog and I have pretty much lost the ability to do any 2 things at once (like conversation + anything). Other than that, hot flashes, and fatigue, I seem to be handling it and am determined to hang on for another 7 months (for a total of 24).
As a long term titan trial member im here to tell you it has to do with erleada passing the blood barrier in the brain...i have been on it 6yrs and i have been splitting my dose 2 am 2 pm...as i got bad headaches otherwise....BUT it is also the eligard / lupron.......as the lupron wares off near day 110( 4mo shot)...im a little less foggy....then when shot is administered its like " i step outside myself" and im not tripping...i tell me wife its lije someone pulls the shades behind my eyeballs. I havent really said much to trials people as they dont like to hear the bad stuff..any ways i was basicly given 18mos at dx....and here i am...like they say the meds are worse than the disease...keep on truckin...bw
I get up frequently for bathroom visits overnight. Several months after starting Erleada I began to have trouble identifying where I was when I got up. As if I were still in my dream until I would focus on a familiar object in the room and snap out of it. Until one night I did not and walked straight into the wall. Woke up when I hit the floor. My oncologist had never heard of these symptoms. He suggested reducing the dosage to 3 pills, 180mg, instead of 4. Thankfully, that seemed to resolve the issue. Other than that I seem to tolerate it well. Also receive Lupron shot quarterly. I was told by my urologist that the reduced testosterone levels tend to contribute toward my memory issues. Fortunately still mild. Hope this helps.
Definitely helped. I couldnt remember any rental car companies today. Wth. Good to know Im not the only one. Also another guy said when it was over the brain fog lifted….hopeing
I was doin fine on Zytiga. Didnt feel bad. Only took it for three months. They track two different levels in your liver. Triglicerydes? Guessn but I have a fatty liver so that was the reason my numbers were off. They shot up really high. Nothing I could do
I am a caregiver for a gentleman with PC. He was recently diagnosed ( Sept 2023) with PC. Doctors wanted him to start Chemo however instead we flew to Canada a just started receiving Lu-177 /Pluvictio. Results are great PSA was a 97 after 1st treatment ( Hormone Sensitive) his PSA fell to a 1. Onset started him on Erleada 1 month ago and he is having bad bad headaches. Look into Pluvictio if I were you
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