Has anyone stopped taking Abiraterone before the recommended time?

I worked with a couple of people that have had to stop abiraterone Because of it effect on their body. Fatigue is one of the major problems, I had a guy I worked with who was just having severe fatigue no matter what he did. Increasing Prednisone was not enough.

Abiraterone Gave me high blood pressure, 5 afib Events And lots of hot flashes. I stopped it after 2 1/2 years because of what it was doing to my heart. Switched over to Darolutamide and noticed no side effects at all like most people. While I was on abiraterone For 2 1/2 years, my PSA was only undetectable one month, It has been undetectable with Darolutamide For the last 33 months.

There was one study introduced at ASCO comparing side effects of two drugs. People were allowed to switch from Enzalutamide to Darolutamide or the other way around.. No one switched off Darolutamide, Most people switched from Enzalutamide to Darolutamide. The test showed Darolutamide had fewer brain fog issues, and fewer side effects.

Have you taken steps to minimize the side-effects?

Are the side-effects due to the Orgovyx or the Abiraterone?

How old are you?

The likely side-effects from ADT & ARPI are quite well known (& you were probably advised of them well in advance).

There has been much reported on the physical benefits of resistance-training exercise while on ADT. Here are just a few that I’ve bookmarked:

> Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch

> A paper on The Benefits of Exercise During Hormone Therapy: https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+2015_PCRI.pdf

> A study about the benefits of exercise to counteract the adverse effects of ADT: (They describe a good resistance-training program): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

By instituting a robust resistance-training exercise program, I was able to minimize the side-effects of Eligard. (I only experienced muscle atrophy, low libido, and mild warm flashes.)

If you do what it takes, you’ll do very well with hormone therapy - it’ll just be an annoyance.

Had stage 4 prostate cancer. On Lupron, Abiraterone, and prednisone. Was to be a 2 year plan.
Was on about 11 months than off 5 months and back on 7 months.
Reason for off, was I could not function or stand up. Also 28 proton radation treatments.
Origional PSA 99.
Wish I'd stopped after a year... am dealing with heart issues now.
Possible internal damage from chemo drugs in the past.

@bryanta This is so painstakingly difficult. Today my oncologist advised me to stop Orgovyx and Abiraterone due to some cardiac concerns. Clearly I don't want a catastrophic cardiac event, yet I also don't want to waste the opportunity to treat my PC. I'm stopping for a month while the cardiology issues get sorted out. I've been on abiraterone and Elligard for 9 months and then abiraterone and Orgovyx for the last month. During this past month I've had concerning cardiac issues, in conjunction with significant mental health deterioration. Is this just the result of 10 months of ADT catching up to me? I know I need to address the PC (very high risk category with node positive involvement on PET PSMA scan, Gleanson score of 9...). I'm grateful PC has treatment options that other cancers don't have. However, right now I'm very concerned with the possibility of a fatal cardiac event. Ugh...

@corin Sometimes there are no good options, Just the least bad.
Any treatment plan is not set in stone and should be open to adjustment
depending on how one is feeling. There are options for treating the different
symptoms one has. I have neurologist, 2 cardiologists, orthopedic, gastrologist,
Rhythm management, oncologist, and primary care. It can take a while
to get all the referrals for specialists one needs.
A patient advocate can be helpful. The patients actions in taking care
of one's self is the most important. Keep moving.

@bryanta Thanks for your encouraging words! It's comforting to know of others who are navigating so many issues as well. I appreciate your thoughtful reply.

@corin
Abiraterone is not at all appropriate for someone with heart issues. When I started taking it, I had no heart issues. It gave me high blood pressure and 5 afib events (I had not had one for 15 years). I stayed on it for 2 1/2 years and it didn’t do me A lot of good I was only undetectable one month.

I know someone that was on for five years, shortly after they stopped they needed open-heart surgery. Was it Abbie? Don’t really know.

It makes me wonder why they had you stop Eligard and switch to abiraterone. Were there no known cardiac issues at the time?

@jeffmarc
I've been on Abiraterone consistently for the past 10 months. They had me stop Eligard and switch to Orgovyx last month, purportedly because Orgovyx is less problematic for the heart. Abiraterone stayed consistent with both meds. At the time of my diagnosis I had high cholesterol and hypertension. Things have gotten worse since treatment, despite being on a statin and BP meds. So, as of yesterday they stopped PC drugs while addressing cardiology needs.

@corin
Exactly what I was talking about.

Orgovyx and Darolutamide Would’ve probably kept your heart condition out of the picture. Putting someone on Abbie if they have heart issues it just doesn’t work.

I’ve been on three blood pressure medicine a few months after I started abiraterone. Still on them today, even though I haven’t been on Abbie for three years. Not a good drug for the heart.

@jeffmarc
Dang! Wish my doctor had informed me of this. Thanks for providing such valuable information. Now I have something to discuss with my "team. "