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Side effects of going off of abiraterone
I went off of abiraterone a week ago after 2-1/2 years on it. I am still weening off the progesterone. I've had many nights recently with vivid dreams of all kinds, and my wife has stated that when sleeping I have exaggerated leg and body movements. Last night, as part of my dream, I actually hit her in the side, such that she shouted at me and woke me.
Have others had similar abiraterone withdrawal dreams and actions?
How many weeks might they persist?
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Even the pastor at our church said in the sermon. I m always awake at 2am and can’t go back to sleep. That’s my problem too. The pastor is female. Lol
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2 ReactionsHas your PSA remained undetectable for the 23 months?
What first generation ADT were you taking along with it, Lupron, ORGOVYX?
I have 18 more months to go and can’t wait to be done. I never gained weight and in excellent physical shape but I’m nowhere near as strong emotionally as I was before I started ADT.
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1 ReactionMy PSA has remained undetectable. I have been also been taking Eligard/Lupron injections. I had my FINAL 6 mo. Eligard injection early Oct., when I discontinued the abiraterone.
Backing up a bit. I had a prostatectomy the end of Dec. 2021. 45% of the surrounding lymph nodes were positive. I then had radiation in June 2022. I started Lupron 3 months after surgery.
I have gained some additional weight. All the while I've been able to maintain most of my strength and activity (non-strenuous). Hot flashes, libido and fatigue have been my primary side effects of all this.
I'm happy to be near the end of my treatment; but, apprehensive of what my PSAs will be next year.
Hang in there with the rest of your treatment journey. Wishing you all the best.
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9 ReactionsI had 3-month eligard injections (and abiraterone). My PSA went from 19.0 to 0.4 to < 0.1 from start to month 3 to month 6 and remained < 0.1 throughout.
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4 ReactionsThat's interesting. It was recommended (at another NCI center) that I take it along with Orgovyx for 2 years to align with the STAMPEDE trial results. I wonder if Mayo's MOs have some clinical data that suggests there are benefits to continuing it another 6 months? I assume we're talking about cases of locally advanced and not distant metastatic PCa.
Mayo based abiraterone on STAMPEDE trial. Yes, locally advanced in prostate bed area.
I figured that much, just curious why they went with 2.5 years instead of 2.
You would normally go with Zytiga or one of the lutamides until your PSA starts rising, then you switch. Other medical problems with Zytiga can come up like heart issues since it’s very hard on the heart. I had to switch off it after 2 1/2 years because of heart issues.
Under the STAMPEDE protocol the only patients who would take it until resistance are those with distant metastatic disease. Locally advanced or contained with high risk features only take it for 24 months.
I'm in a similar boat when it comes to heart issues, in fact, 2 MOs did not want me to start taking it because of the cardiotoxicity. I got screened by my cardiologist who gave me a solid thumbs up so I will hit the 2 year mark of taking abiraterone and Orgovyx in April, although I started taking Orgovyx 10 months before adding abi. The cardio put me on a beta blocker to buffer the effects of abi + prednisone.
You are absolutely correct. None of the guidelines call for 2 1/2 years so I figured that was different from 6 months or 18 months or two years that people with certain Gleason scores get.
If you are on the drug until it fails then PSA rise is a limitation.
The thing is, if you are on it for a limited amount of time, and your PSA starts rising, that also could mean switching drugs or changing treatments.