Please share your experience with Abiraterone/Prednisone

Posted by ambika @ambika, Sep 3 9:36pm

My husband with localized Gleason 9 will be adding Abiraterone/Prednisone to his standard ADT (Orgovyx) soon. The list of side effects is daunting. I would like to hear from all who have been on Abiraterone about their experience with it. Did any one of you had to discontinue it due to intolerable side-effects? I will look forward to hearing from you all.

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The answer to this depends On how long you’re going to be on ADT and how serious your case is. I was just working with a guy who’s Gleason nine, but has no other aggressive issues. Two groups of very knowledgeable people has said that he did not need an ARPI because his cancer wasn’t aggressive enough. He was only a T1c. He would only be on ADT for two years because of the Gleason nine. In that timeframe, it’s unlikely for him to become gastric resistant.

So where does your case stand up against that? ADT alone (Orgovyx) may be all you need. Nubeqa Is great, but you could hold it off until later, These drugs only last so long before you become resistant.

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My husband was on Zytiga/Abiraterone with prednisone and had no serious side effects. It kept his Stage 4 cancer suppressed for over three years. He stopped taking it when it quit working. It is necessary to taper off the prednisone gradually when you stop taking it to avoid serious fatigue. Your husband should give it a try because it might be very effective and his side effects might be manageable and not dangerous. Every man reacts differently.

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Profile picture for Jeff Marchi @jeffmarc

The answer to this depends On how long you’re going to be on ADT and how serious your case is. I was just working with a guy who’s Gleason nine, but has no other aggressive issues. Two groups of very knowledgeable people has said that he did not need an ARPI because his cancer wasn’t aggressive enough. He was only a T1c. He would only be on ADT for two years because of the Gleason nine. In that timeframe, it’s unlikely for him to become gastric resistant.

So where does your case stand up against that? ADT alone (Orgovyx) may be all you need. Nubeqa Is great, but you could hold it off until later, These drugs only last so long before you become resistant.

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@jeffmarc
Hi Jeff,
That description sounds pretty much like my husband’s case. However his Decipher score is high .88 and he has been taking high blood pressure medication for last 10 years.
Initially his GU Medical Oncologist didn’t think Abiraterone or any second generation drug will be necessary in his case but later he seemed to agree on adding Abiraterone to his Orgovyx. It sounds like a grey zone — Abiraterone could benefit and fight cancer more effectively or may not be necessary at all.
If side-effects in his case are easily manageable then one can continue with Abiraterone in hope of fighting cancer more effectively. It is difficult choice.

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I thank you all for sharing your experiences with Abiraterone. It was very helpful.

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Profile picture for ambika @ambika

@jeffmarc
Hi Jeff,
That description sounds pretty much like my husband’s case. However his Decipher score is high .88 and he has been taking high blood pressure medication for last 10 years.
Initially his GU Medical Oncologist didn’t think Abiraterone or any second generation drug will be necessary in his case but later he seemed to agree on adding Abiraterone to his Orgovyx. It sounds like a grey zone — Abiraterone could benefit and fight cancer more effectively or may not be necessary at all.
If side-effects in his case are easily manageable then one can continue with Abiraterone in hope of fighting cancer more effectively. It is difficult choice.

Jump to this post

@ambika
After getting high blood pressure on abiraterone I went on three different drugs, which keep my blood pressure low. I continued taking abiraterone for another year and a half, and my blood pressure stayed at a good level.

It has been much better since I’ve been on Nubeqa. That’s a drug that’s a lot better for the heart and works just as well if not better than abiraterone. It also doesn’t pass the blood brain barrier so it doesn’t cause brain fog like abiraterone can. I was also able to reduce my blood pressure meds.

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My husband had Gleason 9 localized cancer , PSA 46.6
Had radiation, Orgovyx 18 months and Abiraterone/ Prednisone for 12 months .. he stopped Abiraterone/Prednisone early due to cardiac complications, high blood pressure and growing aortic root aneurysm/ aortic valve regurgitation

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Profile picture for Jeff Marchi @jeffmarc

I was on abiraterone and Prednisone for 2 1/2 years. In all that time, my PSA was only undetectable one month. After I finished, I had a metastasis in my spine that I had to get zapped with SBRT radiation.

Abiraterone gave me high blood pressure, 5 afib Events, Each one ending me up in the emergency room, And gave me lots of hot flashes. If you have heart issues, it can be a real problem. I didn’t have heart issues before taking that drug.

I know people that were on it for five years that had no serious issues with it.

When you stop taking prednisone, you must taper it off over at least two or three months or you end up having major fatigue issues.

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@jeffmarc Husband was just put on prednisone after proton therapy finished. He already has an ascending aortic graft from an aneurysm removal. He goes into afib periodically, especially when tired or fatigued (before and after the graft he was in afib on several occasions). He just started the prednisone to shrink his prostate and is going for hours and days with no sleep. I'm really concerned with his heart and the lack of sleep. Suggestions?

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The first year I was on Abiraterone, I had mildly elevated BP. In the 2nd year, by BP took off & my oncologist prescribed Losartan to bring it back down.

Then I went on a 2 year "holiday". When I started back up again, I switched to Nubeqa, due to the BP issue. I have a normal BP with Nubeqa.

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Profile picture for ou14mejc @ou14mejc

@jeffmarc Husband was just put on prednisone after proton therapy finished. He already has an ascending aortic graft from an aneurysm removal. He goes into afib periodically, especially when tired or fatigued (before and after the graft he was in afib on several occasions). He just started the prednisone to shrink his prostate and is going for hours and days with no sleep. I'm really concerned with his heart and the lack of sleep. Suggestions?

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@ou14mejc
If he is really having sleep problems, the prednisone could be a direct cause. You might ask the doctor to reduce the dosage to help Resolve that problem. Normally people on abiraterone Must have Prednisone because abiraterone Stops the body from producing cortisol, and the prednisone restores the amount that is missing. Without that prednisone, there is a tremendous amount of fatigue.

You don’t mention if he is on abiraterone, So I’m not sure Exactly why your doctor prescribed prednisone.

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In response to your request @ambika, my medical oncologist took me off aberaterone/prednisone when bloodwork showed problems developing with my liver (after only six months?, as I remember), which concerned him enough to stop that treatment: the aberaterone abruptly, the prednisone tapered.

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