appelutimide versus abiraterone

[Nowhereman9]

Saw a new oncologist and he took me off abiraterone and put me on appelutemide. Does anyone know the difference between the two. What I should expect? So far I feel stronger and better energy.

[MoonRocket]

The Abiraterone Acetate basically blocks the formation of Testosterone. The Apalutimide blocks the AR (androgen receptor) from binding with Testosterone. Your T levels should increase significantly since there is nothing to bind to.

Are you also on some form of ADT (Lupron, Eligard, etc)

[Nowhereman9 in reply to MoonRocket]

yes

[Nowhereman9 in reply to MoonRocket]

This will mean that my cognitive function will improve. What about my sex drive?

[MoonRocket in reply to Nowhereman9]

Negative. The ADT stops the majority of T production. You'll remain at castrate levels.Fun stuff.

[Tall_Allen]

There has never been a randomized comparison. They act differently and have slightly different side effects listed. Most of your side effects are due to little testosterone because of your ADT.

[dhccpa in reply to Tall_Allen]

If, however, someone used only Erleada or Darolutamide or Xtandi, without ADT, wouldn't they still have basically all the major SEs as using ADT? Or am I getting that wrong? I ask (or keep asking) because some men seem to insist, hint, hope, etc., that using only one of those drugs will solve the major problems of ADT. But if the effects of T are still blocked by those drugs...

Thanks clearing this up. I'm sure you feel you have, but I still read posts of the kind I just described.

[TJS-1 in reply to dhccpa]

Your endocrine system and hormonal interactions are VERY complex; and this cancer seems to be largely heterogenous. I’ve learned that you can’t draw simple “logical” conclusions like you’re doing in treatment decisions. I’m a Darolutamide monotherapy patient going on 2 years now. Some SEs are same/similar to ADT (Firmagon/Lupron and Abiraterone also for 2+ years early on for me), but the majority resolved and none are worse. So far my QOL is vastly superior on the Androgen Receptor Inhibiter therapy compared to ADT. But that of course is just me, and only anecdotal.

[dhccpa in reply to TJS-1]

I understand. What improved once you dropped ADT and went to ARPI monotherapy? Energy levels? Bone strength? Loss of libido? Why do you feel better?

My SEs on Lupron only for 5.5 years have been very tolerable. Hot flashes have disappeared. But still long term loss of libido, bone and muscle condition at most holding ground, and energy levels could be better.

Yes, we're all different, but this issue seems to arise repeatedly, so I've tried to clarify. After all, I would switch to monotherapy (ARPI) if I thought there was a benefit.

And just to clarify, my question wasn't so much about effects on the cancer itself, just the severe side effects.

[TJS-1 in reply to dhccpa]

You can check my profile - I’ve tried to detail the SE differences over time. To clarify, I was off treatment for about a year between ADT cessation and starting Nubequa while pursuing whole pelvic salvage radiation so I’m comparing course of progress from (re)starting treatment, not switching from one to the other.

Libido definitely improved a little, but most important for me is strength/muscle maintenance for an active lifestyle, feeling healthy and general emotional outlook. ADT sent me to a very dark place and stripped me of physical attributes very quickly, whereas ARSI therapy has not (so far). I have much better cognition and optimistic outlook on everything, and no weight gain with little change in muscle composition. I enjoy my strenuous outside activities with friends and bone density remains very good. T holding steady between 500-700 from natural production. Could be just my own psychological predisposition, much like placebo affect? ABSOLUTELY, and I remember to factor in natural aging declines too; but it’s working for me 🙂. Also, Nubequa half life is days (vs months for ADT) so exploring the idea of treatment vacations seems more feasible.

If you have tolerated ADT very well, then perhaps there is no reason for any change in your protocols. I suffered miserably on ADT. Whatever path you take, know I’m in your corner sending only the very best wishes, prayers and vibes out to you and all of us in this brotherhood of the unfortunate.

[dhccpa in reply to TJS-1]

Thanks. Very good feedback. Placebo effect is great when it works in our favor! I'll take some of that! I don't know what my MO thinks about monotherapy, but I'll find out soon.

[fourputt in reply to TJS-1]

Slightly off subject but I am really grateful for the way you update your Bio. I admire the way you've battled and love your attitude. Best of luck to you.

[MoonRocket in reply to dhccpa]

I am one of those on mono enzalutimide (Xtandi). I can tell you first hand I am not experiencing any of the SEs. My energy levels are up, my strength is returning, my QoL is much better than when I was on mono Eligard.Am I an outlier? Maybe but also understand the EMBARK study for mono enzalutimide is not objective for SEs....there was no placebo...the men on mono enzalutimide knew they were not getting ADT. Without a control arm, it's hard to know the source of any SE.

[dhccpa in reply to MoonRocket]

True. I have no dog in the fight; I'm just seeking the answer because I'm at a certain juncture. I guess I could try to Enza mono or Daro mono, though I know Enza at least had its own SEs for some.

Thanks for your input.

[MoonRocket in reply to dhccpa]

Completely understand. Mono Darolutamide isn't approved yet so it might be difficult to get that covered by insurance. I think you just have to bite the bullet and give it a try. I suggest getting the preventative treatment for gynocamastia before embarking (no pun) on any mono ARSI treatment. Good luck with whichever treatment you decide

[dhccpa in reply to MoonRocket]

Thanks for that tip. Did you use radiation or the drug (I forget the name, but it's been mentioned here)?

[MoonRocket in reply to dhccpa]

Radiation..3 treatments

[TJS-1 in reply to MoonRocket]

Interestingly, my insurance approved without a fight or question, and I’m also chemo naive. Floored me and my MO. Since the cost of ADT backbone with the ARSI is also rediculous, maybe it’s a no brainer for the insurance companies from an economic evaluation.

[Tall_Allen in reply to dhccpa]

We should know soon:

clinicaltrials.gov/study/NC...

[Boywonder56]

6.8 mos erleada/ lupron.....im not a doc but i can tell you eligard/lup can definitely cause gognitive decline....are other genetic factors at play wfk's.....but 67 aint spose to be like this...peace bw

[TJGuy]

Zytiga is available in generic at tiny fraction of the cost before it went generic. Erleada is non generic expensive brand name drug One has to question why it seems doctors stopped prescribing Zytiga when it went generic and put patients on other expensive brand name drugs instead.

Profit?

[maley2711 in reply to TJGuy]

not at Kaiser.

[vintage42 in reply to TJGuy]

"Zytiga is available in generic at tiny fraction of the cost before it went generic."

So I started the generic Zytiga, Abiraterone acetate, a few months ago, and my drug program is paying $4,900/month for it. I need to ask why it's still so expensive.

[DesertDaisy in reply to vintage42]

That's crazy. We pay approximately $120 out of pocket for abiraterone at Costco.

[Usernameitis in reply to DesertDaisy]

my husband pays $90 for a three month supply of Zytiga.

[DesertDaisy in reply to Usernameitis]

Just curious, is the $90 for a 3 month supply out of pocket or is that with insurance? If it is out of pocket, can you tell us where you get the Zytiga from?

[Usernameitis in reply to DesertDaisy]

Tim pays the $90 and insurance pays the rest. He goes to university of Colorado Health Sciences Hospital for his oncology treatment and gets it through their pharmacy. His insurance is United Health Senior Advantage.

[HikerWife in reply to vintage42]

That IS crazy. Can buy it for $140/mo from Mark Cuban's Cost Plus online pharmacy.

[vintage42 in reply to vintage42]

So the name of my drug plan is (looong): Blue Cross Federal Employee Program Medicare Prescription Drug Program (MPDP), Basic Option. It is part of my Medicare Supplement, which has paid for all my medical and drug expenses with no copays or deductibles. This year Blue Cross changed from paying for meds via its Supplement to using the newly reformed Medicare Part D, hence the long name.

My two cancer meds, Orgovyx and Abiraterone, are Schedule drugs that I get from the specialty pharmacy Oncco360. They each cost me $75 per month. My plan is paying the usual $2,800 for the Orgovyx -- but $5,000 for the "generic" Abiraterone!

[londoncyclist48]

When I was taken off enzalutamide because it had been decided it had stopped working, I asked my consultant if I could go on one of these other wonder drugs. She immediately said there's no point because they're all about the same. It was a different situation obviously but it's interesting to read long debates on here about the difference between the various drugs but in one fell swoop, my consultant told me they're all pretty similar.

[Mgtd in reply to londoncyclist48]

Hi could you help me. I have read many times the word “consultant”.

Who is this person? A doctor, a nurse, a PA, etc.

Thanks

[londoncyclist48 in reply to Mgtd]

High powered doctor

[Mgtd in reply to londoncyclist48]

thanks

[vintage42]

"... new oncologist... took me off abiraterone and put me on appelutemide..."

How long had you been on abiratirone? Was there a problem with the abiraterone, or did he just think the apalutamide was superior?

My oncologist wanted me to use apalutamide (Erleada) but I declined because of my seizure history, and chose abiraterone instead.

[Nowhereman9 in reply to vintage42]

So far I would say I feel better and I don’t have to take the corticosteroid. So maybe less risk of osteoporosis and diabetes

[Usernameitis in reply to Nowhereman9]

Interesting. It is my understanding that 5 mg of prednisone is necessary when taking Zytiga. My husband takes 250 mg of zytiga and the 5 mg of prednisone every morning. The prednisone is supposed to help mitigate the negative SE of zytiga.

[Nowhereman9 in reply to Usernameitis]

Mitigates hypertension

[London441]

If you feel stronger and better on Apalutamide, and are still on Lupron, it’s a placebo effect. Best plan is to enjoy it. Both combinations are effective.

[Nowhereman9]

if releases does not cross blood brain barrier and my adrenals are free to produce testosterone than there may be cognitive benefit so maybe not placebo

[Nowhereman9]

*if erleada

[Jazzman2023]

My understanding (correct me if I'm wrong) is that Apalutamide/Erleada DOES cross the blood/brain barrier, as opposed to Darolutamide/Nubeqa. That in itself MAY contribute to causing cognitive side effects. I'm researching Erleada, because I may be switched from Abiritarone (which has caused low platelets and low liver markers for me) to Apalutamide/Erleada.......... Best of luck to you !

[vintage42 in reply to Jazzman2023]

Re blood/brain barrier:

"CNS-related AEs reported with AR inhibitors are thought to be associated with the penetration of the blood–brain barrier (BBB) by these drugs. The AR inhibitors enzalutamide (Xtandi) and apalutamide (Erleada) penetrate the BBB with a brain:plasma ratio of 27% and 62%, respectively, in mice…" ncbi.nlm.nih.gov/pmc/articl...

"Enzalutamide (XTANDI) and apalutamide (ERLEADA) both cross the blood-brain barrier. However, data from the phase III ARAMIS trial suggested that darolutamide (NUBEQA) does not penetrate the blood-brain barrier as well as these earlier-generation inhibitors." onclive.com/view/dr-higano-...

That "not as well" for Nubeqa means a brain:plasma ratio of 19%, according to my urologist, but I can't find a reference.

Notably, people with a history of seizure were excluded from the clinical trials of Xtandi and Erleada, and several references say such people should avoid those two meds.

[Cooolone]

I'm curious as to the change absent a "need" ie, resistance! And if going the "Lutamide" route, would definitely discuss going top shelf with the 2nd generation receptor blocker "Darolutamide" due to its better efficacy and yes, blood brain resistance...

I recently toyed with the idea of going Lupron Depot vs the Degarelix I've been on for a while now. But honestly, I am old school in thinking if it isn't broke, why fix it! I'm beginning to tire of the monthly injections and injection site reaction that is pretty significant for me. But it's working... So why mess with it! I've read all I could about Lupron vs Degarelix and Degarelix wins! Alas... So it stays as it is, regardless of the j convenience, lol.

Anyways...

Good Luck and Best Regards

[pj1121]

i’m on Lupron abiraterone. Asked her why not an AR blocker instead of Abiraterone. She said I like to start with abiraterone. If you become CR, AR blockers will still work for 1/3 of people.

[caltexman]

The only side effect I remember from 2019 while on Erleada (clinical trial) was that I had to take a nap every afternoon. I took it as the only ADT drug while on salvage radiation. So far, so good.

[Nowhereman9]

Felt good on the Appelutimide but developed a terrible rash all over had to go back on abiraterone. I saw a video on YouTube quoting the titan 3 study that applelutimide caused no change in quality of life when added to ADT treatment.