Apalutamide side effects: I was on... - Advanced Prostate...

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Apalutamide side effects

miina profile image
24 Replies

I was on Zytiga but discontinued due to raised liver enzymes. I am still hormone sensitive with a PSA of .008. I have just been prescribed apalutamide (Erleda).How have side effects been for others . I sense that they may be worse than Zytiga's

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miina profile image
miina
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24 Replies
NPfisherman profile image
NPfisherman

I took apalutamide for only a month as part of a clinical trial before surgery, but they weren't bad for me....minimal fatigue...

Don Pescado

TonyS58 profile image
TonyS58

I'm just finishing month 2 of Apalutimide plus Lupron and I haven't noticed the side effects being any worse than Lupron alone... with multiple trips to urinate overnight and chronic fatigue.

WaltN profile image
WaltN in reply toTonyS58

Been on Apalutamide almost a year. My immune system has crashed, now in "chemo-induced neutropenia." Take 4 pills per day.

Has anyone had the injection to boost the immune system back to normal, or lowered doseage?

I have many other things that need done such as teeth cleaning, colonoscopy, carcinoma Mohs surgeries, pnemonia vaccine, Shingrix vaccine, etc, that are prohibited during this crisis of my immune system to below 1000 absolute neutraphils.

The good news is my PSA went from 23 to 0.2. The Apalutamide is a success but at the life-threatening expense of my immune system.

Currently also on Lupron for @14 years but its resistive now. Have not had PC surgery or radiation due to porphyria restrictions.

ctflatlander profile image
ctflatlander

I have had to reduce my dose from 1000mg to 750 to 500mg where I'm at now. Been on 500 for about 6 mos now and ALT/AST normal. Min side effects and PSA undetectable.

miina profile image
miina in reply toctflatlander

Hi are you referring to Zytiga or Apalutemide dose reduction

ctflatlander profile image
ctflatlander in reply tomiina

sorry for my reply. I'm referring to Zytiga.

pilot52 profile image
pilot52

Up your activity and have fun...I am on Xtandi and had my choice...they say 70% experience fatigue...I decided to be the 30%..Still on Lupron...I have been on a tractor, chain saw, mower , blower, and other equipment 9 hours a day for the last 4 days ...feel great...the more I bust my ass the better I sleep. Will be 67 on the 11th...My second Stage 4 cancer...not trying to brag just trying to point out not to let the monster rule our brain...this afternoon when my glass is half full getting another cold one...Baby Braves are having a good season and college football in full swing...everyone have a great day ,Fall is here.....A still Grounded Sky King....supposed to hear something soon!!! Cheers, even to that New York dude. J-O-H-N

j-o-h-n profile image
j-o-h-n in reply topilot52

Thanks for the cheers....May your days be filled with busting your ass... I'll keep trying to bust your immies.....

Good Luck, Good Health and Good Humor

j-o-h-n Monday 09/02/2019 11:15 AM DST - Pinnes

bubbles48 profile image
bubbles48

Periodic fatigue and nausea has been my experience so far. I have been on apalutamide 6 months already. I have far more good days than bad ones, and I do not let any of it stop me from what I need to do. When I get really tired, I take a power nap, and then get up and continue on. I watch my diet and try to exercise and do strength training periodically. I am grateful to have this medication to continue to lower my PSA.

pilot52 profile image
pilot52 in reply tobubbles48

V1.........V2.......Rotate....we have positive rate of climb...wheels up....400 ft ...flaps up....turn left to 270 climb and maintain flight level 240 expect 410 at hand off. Blue Skies a Grounded Sky King....Glad it is working for you and you are working it!!!!!happy Labor Day

monte1111 profile image
monte1111 in reply topilot52

"Curse you Red Baron!" Sounds like you are on Gracie's dog house. Aviator's cap, goggles and scarf blowing in the wind. Hope you get up in that Blue Sky soon. Enjoy.

pilot52 profile image
pilot52 in reply tomonte1111

Gracie is getting a little wary of ground travel. My Mercy Air Corps and Angel Flight passengers are wondering where I have gone....however as we say in Georgia...God willing and the creek don't rise I will be flying soon....!!! Blue Skies!

WaltN profile image
WaltN in reply tobubbles48

Me2! Naps alleviate exhaustion.

-----

Been on Apalutamide almost a year. My immune system has crashed, now in "chemo-induced neutropenia." Take 4 pills per day.

Has anyone had the injection to boost the immune system back to normal, or lowered doseage?

I have many other things that need done such as teeth cleaning, colonoscopy, carcinoma Mohs surgeries, pnemonia vaccine, Shingrix vaccine, etc, that are prohibited during this crisis of my immune system to below 1000 absolute neutraphils.

The good news is my PSA went from 23 to 0.2. The Apalutamide is a success but at the life-threatening expense of my immune system.

Currently also on Lupron for @14 years but its resistive now. Have not had PC surgery or radiation due to porphyria restrictions.

Garbonzeaux profile image
Garbonzeaux

I thought Apalutamide was approved only for castrate resistant patients, which you don't appear to be. Don Pescado got it in a clinical trial. Am I missing something?

NPfisherman profile image
NPfisherman in reply toGarbonzeaux

I was part of a clinical trial to give apalutamide to pre-surgical patients with ADT prior to surgery for 1 month--had surgery--still got APC....I was PT3A--still....glad I did the trial...It was prior to final approval of apalutamide... do not know the final outcome of that study, but it makes sense for high risk--gleason >=8 patients...I do wonder what the final outcome from the study will be....

Don Pescado

TonyS58 profile image
TonyS58 in reply toNPfisherman

Insurance covered my prescription for Apalutimide even though I suspect you are correct and it is an off-label use. I believe that the Titan trial results, which were published in May, might have been the influencing factor. ascopost.com/News/60096

TonyS58 profile image
TonyS58 in reply toTonyS58

Here's TA's writeup on the report.

pcnrv.blogspot.com/2019/05/...

Hi everyone, Ive been through the ringer...RP, radiation firmagon but they didn’t get everything and after all that, I had a PSA doubling time of 8 weeks and bone Mets 2 months after the radiation was completed. That said, I was prescribed Erleada and have been on it since March 2018. I have experienced just about all the side effects, but not at the same time and they come and go. But it worked, within 3 months, my psa was .05 and the bone Mets were gone.

tallguy2 profile image
tallguy2 in reply to

Great results!

in reply totallguy2

No kidding...I'm very blessed to have responded so well. Hopefully it's for a long run :)

WaltN profile image
WaltN in reply to

No neutropenia?

Been on Apalutamide almost a year. My immune system has crashed, now in "chemo-induced neutropenia." Take 4 pills per day.

Has anyone had the injection to boost the immune system back to normal, or lowered doseage?

I have many other things that need done such as teeth cleaning, colonoscopy, carcinoma Mohs surgeries, pnemonia vaccine, Shingrix vaccine, etc, that are prohibited during this crisis of my immune system to below 1000 absolute neutraphils.

The good news is my PSA went from 23 to 0.2. The Apalutamide is a success but at the life-threatening expense of my immune system.

Currently also on Lupron for @14 years but its resistive now. Have not had PC surgery or radiation due to porphyria restrictions.

in reply toWaltN

Hi WaltN, this post is somewhat out of date...To answer you question, I did not experience neutropenia...the toughest side effect was blackouts (falling down). As a result, I was taken off the Apalutamide @ October, and just started 6 rounds of Taxotere. After that is done, I’m told that Darolutimide will be next.

Eliga profile image
Eliga

Talking to your doctor should prescribe Enzalutamide is better tolerated, effective and safe with fewer side effects

GoLowPSA profile image
GoLowPSA

I have been taking Apalutamide with Relugolix for about 4 weeks now....only significant side effects are tolerable hot flushes and some fatigue. Hope you do well.

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