Erleada/Apalutamide: Any positive experiences?

[Daughter17]

There are many posts and experiences of bad side effects of Erleada and only a few better experiences. Please, tell me some succesfull stories and good experiences if you have. Reading just bad stories make me more worried and inclined to think that also my dad will have all horrible side effects. He is going to start Erleada soon.

[mrscruffy]

I have been dealing with this for 6 1/2 years now. In that time I have found a love for my wife and female friends that surpasses anything I have ever experienced. We travel together, and meet for a meal on a monthly basis. As tragic as this disease is it has made me a better man all the way around.

My best friend cooking for me after a night on the town

[Jpl506]

I was on Erleada for 26 months and can’t name a single horrible side effect. I started lupron 2 months before apalutimide and my side effects remained the same. Hot flashes, night sweats, low libido, etc but they didn’t get worse on apalutimide.

[Daughter17 in reply to Jpl506]

Thank you!

[Hailwood]

I have been on Erleada and Lupron now for almost 3 years. Some very slight weight gain, no hair on my body and loss of some muscle mass, no libido and some hot flushes (all of which in the big picture are really manageable) but I work full time as an RN, ride my motorcycle to work over 300 days a year, and my PSA is undetectable as is my Testosterone.

[Daughter17 in reply to Hailwood]

Thank you! Glad to hear your treatment sounds to be successfull and side effects tolerable 👍 Good luck also in future!

[ncisc001]

My dad has been on Erleada for a few years now and no significant side effects other than some night sweats here and there. It’s working great for him.

[tayninhtom]

My metastatic disease went to the brain. And it’s a rare occurrence. In addition to Lupron, Erleada was prescribed by my MO. Yes, there are side effects but they are not too severe. I still play tennis and golf and walk a good bit. I continue my workouts to maintain muscle mass. Erleada is one of the few drugs which will penetrate the blood brain barrier. I get a MRI of the brain every three months. So far, so good. I’ll put up with the side effects any day since they have minimal impact on my quality of life. I’m 76 years old.

[TonyS58]

I was on Erleada for 20 months before they found radiologic progression in my sacrum. It was very tolerable. Notable side effects were no body hair or body odor.

[Chadsdad]

After 3 years on Erleada/Eligard, my PSA and T level is 0. I have hot flushes, reduced energy and lack of libido that are not terrible. I think exercise, eating healthy and staying active are some keys to success with adt. All of us are different and handle treatment differently. For my situation, Erleada was a good choice.

[Wife32]

My husband was on it for a year and had no additional side effects (had been on Lupron as well). He went off all treatment per his doctors orders at Mayo Clinic, and his testosterone recovered within 6 months.

Honestly his only complain was hot flashes at night. He worked full time, traveled, exercised.

[icanwintwice]

Hello there, I just started Erleada as my liver struggled with Zytiga. Im just starting out but other than hot flashes, not having a problem. fingers crossed!!

[TJS-1]

I’ve done various protocols of Firmagon, lupron, lupron + Zytiga, and Duralutamide alone. I believe Erleada/Apalutamide and Duralutamide (both ARI’s) are very similar. All bad side effects I experienced seem to have been from the T reducing drugs. I have no side effects at all from the duralutamide, and I believe it is less likely to cross the blood brain barrier than the other “___-mides.” Agree that keeping up an active lifestyle with daily exercise is essential.

[SteveTheJ]

Everybody is different. I started taking Erleada in April 2000 and my only complaint is of fatigue and possibly reduced appetite. Even the fatigue could be attributed to age so possibly, maybe, I have no side effects at all. My cancer is in remission as of Sept 2022 and treatment continues.

Fear isn't going to help. You should listen to people who tell the truth about their treatment but make the best decision for yourself. If you listen only to the people who are dying and having the worst experiences you don't do anything and the cancer wins.

[john4803]

I have had the similar SE's as others & they may be more related to the Lupron, but it may be failing after only 6 months. See my post below. healthunlocked.com/advanced...

[palser1]

Hi , my husband has been on Erleada and zoladex and xgeva since he got this awful disease diagnosed 18/ 07/21 with Gleason 9 Psa 122

Bone Mets and lymph nodes , his psa went down to 0.03 for a while about 7 months during this time he had another pmsa scan lymph nodes had resolved as did his bone Mets barring 2 . Then it began to rise again hen it got to 2 our oncologist said it was still working but seems the prostate is a bit stubborn so he has just had radiation to prostate and bladder . His side effects were very bad in 4 tablets . So oncologist said drop to 3 which he did and is really good on them he has always been asymptomatic and still is . Just speak to your oncologist .

Hope this helps

Carol