Orgovyx causing more brain fog than Lupron

[V10fanatic]

I switched over 5 weeks ago and have been experiencing more cognitive aphasia and adverse spatial awareness issues(clumsiness). Will these issues settle down over time? Anybody else notice this?

[6357axbz]

2 months on orgovyx and zero additional SEs over the abiraterone I’m taking

[JohnInTheMiddle]

I'm interested in the answer to this question because I would very much like to be on Orgovyx aka Relugolix - the new once-a-day pill oral androgen antagonist ADT. I'm currently on Firmagon / Degarelix, which is the injected androgen antagonist ADT. I've also heard that side effects from Orgovyx are very good, good as in "low". And as with ADT antagonists generally, Orgovyx has a lower-risk cardiovascular profile.

[Jpburns]

Been over 2 months on orgovyx. Lotsa hot flashes/chills, but not intolerable. I’m forgetful of names occasionally, but was experiencing some level of that before meds. YMMV.

[Cape1]

I was on it for ten months and felt the fog increase each month

[jedgar1]

I don't know when I did Zytiga and Lupron for two years, there really wasn't much left of my brain and when I stopped my oncologist at Dana-Farber told me I might get 60% back about two years ago I started on Adderall which helped a lot until I couldn't get Adderall and now I take Ritalin and it helps me focus and finish things and I believe it is becoming more common among prostate cancer patients

[JohnInTheMiddle in reply to jedgar1]

Your comment J Edgar about Ritalin, aka methylphenidate is interesting. I was taking it for a while and then my blood pressure went really high and so I stopped taking it. I might start taking it again. It was only because of research and nagging that I was able to get my doctor to put me on this. It doesn't seem to be as standard suggestion. It might not be for everybody but it should be something that is discussed in the context of ADT and just metastatic prostate cancer generally.

[Prostateless2020]

I just recently completed 14 months of Orgovyx post IMRT. My side effects were minimal, the common ones you hear of; slight fatigue, muscle loss, and over time, mild brain fog and clumsiness. I did not do any formal exercise, however, I work on my feet all day and lift heavy objects. Crouch and move through camper vans, so I believe that to be a form of exercise. I know I should have been doing resistive training with weights, and initially I tried, but quickly realized it was futile. My doctor at MSKCC dug his heels in on giving me Lupron and I flat out refused. He offered zero assistance in getting the Orgovyx. But IMO, going with the Orgovyx was the best decision I made. And now, only 4 weeks off the meds, I am starting to feel like my old self. Better attitude, seemingly more energy. Could be psychosomatic but I am thrilled to be off that stuff. BTW, my PSA has remained at <.05 throughout. If I have to go back on in the future, it will be Orgovyx or the next latest and greatest, but definitely not Lupron!

[JohnInTheMiddle in reply to Prostateless2020]

Fantastic information about your experience with Orgovyx. I see that one of your medical oncologists in your bio suggested you would be a candidate for a complete cure. And you are now on an extended holiday from ADT. And so your energy level is great. I like to hear about the advantages of Orgovyx - but the idea of the holiday doesn't sound like a good idea. My understanding is you have to keep suppressing because otherwise it just wakes up again.

(A systematic approach to preventing listen to a more aggressive form of prostate cancer, possibly involving periodic holidays from therapy, is a separate question.)

[Cape1 in reply to Prostateless2020]

I’ve been off Darolutemide and Relogolix about six week, and have felt the fog lifting.

2020, I think your job is a plus as all that moving , bending, and contorting is a form of the bounding/bouncing I do in deep end of a pool to move lymph.

[85745 in reply to Prostateless2020]

May I ask what time of day do you or did you take the Orgo ?

[Prostateless2020 in reply to 85745]

Early morning I gobbled a handful of pills. Vitamins, blood pressure med and Orgovyx. Then I put yogurt, oatmeal, blueberries, honey and coffee on top.

[85745 in reply to Prostateless2020]

AM or PM may not make a difference I guess to SE's. I love blueberries I have 3 nice bushes I harvest from every season. I stand there and just eat and pick 3 to 1 ratio, lol Best

[Explorer08]

I was on Orgovyx for 55 weeks and then off for about 70 weeks. Restarted Orgovyx and added in Xtandi about four months later. Combating side effects with regular cardio and weight lifting (every other day) and that has been effective for me. Not perfect but I am satisfied so far. One of the primary researchers on Orgovyx at Duke U. said that doing leg presses is key to stability.

[85745 in reply to Explorer08]

May I ask what time of day do you or did you take the Orgo ?

[Explorer08 in reply to 85745]

I take Orgovyx with breakfast.

[85745 in reply to Explorer08]

Thanks, seems that's what many do, take mine at 5pm , I'm lights out by 8pm. so far all good. Best

[85745]

Sorry to hear V10, I am taking Orgovyx my self, so far no side effects, but I am taking lions mane mushroom extract- said to be good for cog issues- Alpha Lipoic Acid and Acetyl L Carnitine along with B1- all said good for nerve cog issues. I take the Orgo around 5 pm maybe that helps don't know. Maybe research these supps see if there right for you. Are you sleeping good - do you ck your glucose levels. I will be buying a MoJo blood glucose/ ketone meter well worth it I feel. Best

[V10fanatic in reply to 85745]

I take a Turkey Tail, Reishi, Lions Mane extract each morning.

[85745 in reply to V10fanatic]

Are you finding any benefits from the mushrooms ? I know there are herbs said to help, off the top I can't recall them Seems like all these meds have a trade off. Just found one ! Ginkgo Biloba, I kow there is more. Best healthline.com/nutrition/gi...

[V10fanatic in reply to 85745]

They seem to helping my overall immune system. My wife, along with a lot of our friends and neighbors have been sick lately, yet I have not caught any of it(even though my immune system is still hammered from the chemo!)

[85745 in reply to V10fanatic]

Hang in there, stay positive wish you the best. Immune support ! look into IP6 Gold also on amazon. Best ip6gold.com/

[rainlessman]

9 months on Orgovyx was an awful experience for me. I had severe hot flashes, low energy, and negativity.

[85745 in reply to rainlessman]

May I ask what time of day do you or did you take the Orgo ?

[rainlessman in reply to 85745]

mornings

[Boonster]

I've been on Orgovyx for nearly 2 1/2 years. All of the side effects have been manageable. That said, brain fog, never severe, now seems to be gradually worsening.

I plan to stop taking the drug when I have completed 36 months on it.

For me, a major reason for continuing Orgovyx has been its efficacy. My lab tests have been very encouraging; my PSA level has been undetectable, staying at <0.0145 since the second month on Orgovyx. My testosterone level also has been well within targeted levels.

[85745 in reply to Boonster]

May I ask what time of day do you or did you take the Orgo ?

[Boonster in reply to 85745]

9:25 AM daily.

[85745 in reply to Boonster]

Thanks, wanted to see if morning or evening may lesson side effects. Lot of moving parts to SE and how to mitigate. Best

[j-o-h-n]

Fog:

One day my M.O. will say to me: "John, I hate to tell you this but you have one week to live" and I'll reply "Who's John?".....

Good Luck, Good Health and Good Humor.

j-o-h-n

[duke69]

I have never been on lupron. Heard to many horror stories about SEs from people I knew. Was on Orgovyx for 21 months and Zytiga for 18 months. Never had any SEs (including hot flashes) except fatigue and some brain fog

What I really like about Orgovyx is how quickly it works. In ~ 2 months my PSA went from 30 to undetectable and stayed undetectable. Took a “holiday” in October and in late January my PSA was still undetectable and my my testosterone was up from the teens to 290.

Within a month after stopping Orgovyx my brain fog was gone, except for the normal fog of a 76 year old. I do exercise very regularly, which, from other posters seems to be extremely important in minimizing SEs.

I have a theory that one reason that MOs discourage Orgovyx and recommend lupron is that they make money doing lupron injections but not with Orgovyx.

[JPnSD]

Not my experience at all when switching.

[jazj]

Orgovyx was approved by the FDA December 18, 2020. Over 3 years ago. I'm not at a stage I need ADT but I read a boatload about it and thought, based on the side effect profile why would any MO that has up-to-date knowledge, recommend any other drug for ADT than this newer drug that more quickly decreases testosterone, has less side effects, has less incidence of cardiac issues, and allows testosterone levels to come back quicker when discontinuing? (which the latter you can look as being good or bad depending on your perspective.) Wouldn't this be the best first-line ADT drug then you add Xtandi at later stages as needed?

Has anyone here actually been on something like Lupron, or any other ADT drug, switched to Orgovyx, then wanted to go back to Lupron or whatever they were taking before for less side effects or for better PSA lowering effect? I suppose there may specific situations / personal responses to drugs that may warrant using other drugs but all I can recall off the top of my head was no shots, good effectiveness, and better side effect and safety profile sure sounded like a no brainer to me. But I could be naive due to the lack of actual experience.