Stopping abiraterone

[chickgreen]

OK, specific question time here.

I've been on Abiraterone+Prednisone for about a year and a half, with a 2 month break around Christmas last year. My Doc says the normal course of Abiraterone is about 18 months, and I think that we're kind of dancing around discontinuing the drug, for me.

I know that I have the taper off the prednisone slowly, but I do have LupronMemory and I don't recall what it felt like, not taking Abiraterone.

Can anyone relate their experience in stopping this drug? I will remain on Lupron.

[Tall_Allen]

The STAMPEDE trial for N1 (pelvic lymph node) -only patients had them taking abiraterone for 2 years and ADT for 3 years with no breaks. I doubt that you'll notice much difference, because most of the side effects are due to the long-term ADT. But everyone's different.

[Magnus1964]

I was on aboraterone for 3 1/2 years. If it's still working why stop.

[Bdale]

I had Abi with Prednison and Lupron for two years, my PSA was under control until it started rising at 20 months. I stopped Abiraterone and really didn't feel any difference, after 3 months we went to Prembolizumab (Keytruda) due to my tumor being MMR. Besides skin rash, my PSA went to 0.09. I took the radical step to get an Orchiectomy so now I'm done with any treatment until the PSA starts rising again. Feels great!

[Jbooml]

I was on Z/P for 4 years January…too many heart palps etc so I quit in June..tapered off P for a month and am now clear of both. Has it improved my lot, yes but things are still different as I continue on Eligard. My joints are sometime sore especially hips and Achilles..I recently went on a camping trip which involved long portages and canoeing from which my 30 year old claims I remain inimitable in my 70 yrs in outdistancing both he and his father in law. They both swear they’ll never rise to another of my invites, so I suppose I’m doing allright.

[alsam]

Hi There,

Just wanted to say I am coming into year 12 of an Abiraterone/Prednisolone journey...Only once in that time have I stopped taking the drug....This was only for a short four week period...other that I have always being on these drugs...I am referred to as a super responder.... Commencing PSA 509 Ng/ml...reaching over 800 Ng/ml...Gleason of 4+3=7.….

before the drug started to work bringing it down to less than 0.1 over a seven month period....Only this year 2023 as it started to rise again... Currently at 2.2 Ng/ml.....but its a very very slow increase....Just wanted to share that with you.....Stay safe and well....Alfred ....

[lcfcpolo in reply to alsam]

Absolutely brilliant response. Long may it continue. Out of my interest, do you take any additional supplements or repurposed drugs or any particular dietary advice. Thank you.

[alsam in reply to lcfcpolo]

Thanks....I take additional supplements to support my immune system. Some of these are not your traditional off the shelf products...however they have worked for me...Noni (get the original nature type)

Guinea hen Weed (off the shelf)

Moringa (off the shelf)

I have stayed fairly clear of red meat

Try and stay off sweet sugary things but that's my vice to be honest....

[Maxone73 in reply to alsam]

Hi! Can I ask you how much of those supplements you take and when? (When during the day, always on in cycles,…)

[alsam in reply to Maxone73]

I switch between the Moringa and guinea hen weed....So for a few months it will be Moringa then switch to Guinea hen weed ...The noni is a daily thing...tablespoon each morning.....Cheers,

[Maxone73 in reply to alsam]

Thank you! I think I will follow a similar schedule once I am done with chemo.

[Mascouche]

I used to take 10mg of prednisone per day (2 x 5mg). When my treatment concluded, my oncologist told me to do 2 weeks at 5mg followed by 2 weeks at 2.5mg and then stop.

I was aching all over after a week and so I searched for protocols and here is one I found that I switched to and it was much easier to tolerate.

If you are presently taking 10mg, then for 2 weeks take 10mg one a day and 5 mg the next and then 10 the next and then 5 the next.

Once the 2 weeks is up, for the next 2 weeks take 5 mg one day and 2.5mg the next, wash/rinse/repeat.

Then after 2 weeks is up, for the next 2 weeks take 2.5mg one day and nothing the following day and then 2.5mg one day, and nothing the following day....

Wish I had know this up front.

[MrDon2]

I have been on abiraterone since May 2020. Still working.

[chickgreen in reply to MrDon2]

That's a good long while! I'm glad that it's still working for you

[Mbnm in reply to MrDon2]

Great…started aberaterone and pred 4 months ago for spread to lymph nodes..psa down from 12 to .008 …T down to 0.2….so will I be on forever or till psa climbs?....did you have problem with headache and high BP ?I am 80 yearsold! Thankks

[chickgreen in reply to Mbnm]

I think that the Abiraterone worked great - my T was super low, my PSA has been < 0.02, I had no complaints there. But then at about 8 months, my blood pressure started climbing - and it got to worrying numbers. So I had new BP drugs, and the pressure still went up... Gave up on the Abiraterone, and the pressure went down. Tried again - after 8 months.....

These drugs are really powerful, and do a lot of changes to the body - not just the testosterone levels. And at some point they affect all of us a little differently. So I found that I need to monitor myself, and when something is not working right I seem to know that before the doctors.

As to length of time for the abiraterone - I hear 18 to 24 months mentioned as the general time limit on that drug. I'm on Lupron for Life according to my last oncologist, but I get a new oncologist this year so maybe that will change. I think that when the PSA goes up they still want to keep you on ADT, because they think that the testosterone will make the PCa go even faster.