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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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lag | @lag | Sep 8 8:14am
In reply to @ambika "@bikeman1 I have heard that Estradiol patches have much less side-effects than ADT drug’s like Lupron..." + (show)
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@bikeman1
I have heard that Estradiol patches have much less side-effects than ADT drug’s like Lupron or Orgovyx (though Orgovyx is far better than Lupron shots).
It is possible that you have lesser side-effects overall from Abiraterone because you are using Estradiol patches.
How did you find a doctor who agreed to prescribe Estradiol patches. By the way I have heard from women who use Estradiol patches that there is a serious shortage of it and it is out of stock in many pharmacies currently.

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@ambika Estradiol patches have had a history of shortages and being out of stock for several years. I used a monthly patch and had lots of trouble getting it when I needed a refill. I am sorry to hear things haven't improved.

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ambika | @ambika | Sep 8 4:16pm
In reply to @lag "@dailyeffort Yes--Abiraterone and Lupron kept my husband's Stage 4 cancer suppressed for over three years, without..." + (show)
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@dailyeffort Yes--Abiraterone and Lupron kept my husband's Stage 4 cancer suppressed for over three years, without severe side effects. So for some men, it is a good option.

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@lag
I am so happy for you both.

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ambika | @ambika | Sep 8 4:42pm
In reply to @bikeman1 "@ambika Yes, that is why I went with the patches instead of Orgyvx or Lupron--many fewer..." + (show)
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@ambika
Yes, that is why I went with the patches instead of Orgyvx or Lupron--many fewer side effects. For example, the patches will strengthen your bones, while the others will weaken them.
I don't know if somehow the patch moderates Abi/Pregnisone side effects, but in any event I feel very lucky in the side effects department.
You are correct that it's hard to find a doctor willing to prescribe the patches. I suggest you go to estradiolinitiative.org and ask them for help finding a doctor in your area. They are incredibly responsive and helpful. And thanks for the heads up on the patch shortage.

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@bikeman1
Thanks for the advice. What is the strength of the estradiol patch you take? I wonder why GU Medical oncologists don’t see the benefit in prescribing Estrogen patches especially when it is cheaper and works as good as ADT.
The still wonder if estradiol patch is as effective as say Orgovyx in bringing down testosterone level.

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bikeman1 | @bikeman1 | Sep 9 6:59am

The patch box label says that it delivers 0.1 mg/day. I started with 4 patches applied twice a week (in my case, I change them every Wednesday and Sunday). When my first post-patch blood test results showed my PSA was <0.006 and my Testosterone was <3, I switched to 3 patches twice a week. These doses are consistent with the PATCH protocol.
Why doctors don't universally prescribe the (cheaper) patch is a good question and has been discussed in several other threads. My answer is many doctors are conservative (even younger ones, as the young doctor I saw for a second opinion in MSK would not endorse patch use); the patch is "off-label"; and it is not the standard of care in the NCCN guidelines. The PATCH trial showed the patch is at least as effective as traditional ADT, so the GU doctor's position doesn't make sense.

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lag | @lag | Sep 9 9:35am
In reply to @ambika "@lag I am so happy for you both." + (show)
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@lag
I am so happy for you both.

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@ambika Thank you. They quit working after about three years, so we have had to move on to other treatments. But the three years of remission during the height of the pandemic was a wonderful break.

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