Prostate Cancer, Stage 4, spine & pelvis, Eligard, now abiraterone

Posted by albert785 @albert785, Sep 13 8:06pm

Hi, as the topic says, I am Stage 4, they started me on Elegard and less than 3 months later they want me to start taking abiraterone (Zytiga) along with prednisme.
Has anyone run into this situation that can tell me their experience?
Thank you very much.

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@sicernon3

Hi Proftom2,

I am on Eligard (6 mos) plus abiraterone and prednisone.
I was told the abiraterone helps with long term recurrence and the prednisone counteracts some of the side effects. However, I know each case is unique and the treatment protocol might vary. I had Gleason score 9 PC and my PSA has been at 0.0 for the past 3 blood tests. The only issue has been finding s dose of abiraterone that doesn’t elevate my liver enzymes (bilirubin, AST and ALT). Anyway, best to you and may you be worry free.

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Most people don’t have problems with liver enzymes. I was on abiraterone for 2 1/2 years and never had an issue, but they checked it every month.

I know some people have reduced it to three pills and even two pills and still had good results. For me, I reduced it to three pills and in 18 days, my PSA went from .2 to 1. Not very successful.

If you try to reduce it, make sure to get a PSA test real soon. With a Gleason nine your body may not like less than four pills.

After Abiraterone, when your PSA rises, you can try Darolutamide, it doesn’t affect the liver as much, normally, and the side effects are minimal for most people.

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@kirste24

What wellness and wholeness changes did you make or do? My dad is stage 4 prostate cancer and we are looking at whole body health to help his body fight the cancer.

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Hi @kirste24, you and your dad may be interested in these related discussions:
- Nutrition & more for living well with metastatic prostate cancer?
https://connect.mayoclinic.org/discussion/nutritional-values/
- The long middle stretch https://connect.mayoclinic.org/discussion/the-long-middle-stretch/

How is your dad doing? What treatment has he had or is he on?

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@jeffmarc

Most people don’t have problems with liver enzymes. I was on abiraterone for 2 1/2 years and never had an issue, but they checked it every month.

I know some people have reduced it to three pills and even two pills and still had good results. For me, I reduced it to three pills and in 18 days, my PSA went from .2 to 1. Not very successful.

If you try to reduce it, make sure to get a PSA test real soon. With a Gleason nine your body may not like less than four pills.

After Abiraterone, when your PSA rises, you can try Darolutamide, it doesn’t affect the liver as much, normally, and the side effects are minimal for most people.

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I recommend talking to your doctor about switching to Darolutamide. The efficacy of Daralutamide is outstanding and the clinical trials have consistently shown this drug out performs the other Androgen receptor signaling inhibitors (ARSI) (i.e., Abiraterone, Apalutamide, and Enzalutamide). For me personally, I would not want to be on prednisone for long periods of time. I understand I had to take prednisone daily while on chemo, but beyond that, I prefer not to be on prednisone for long periods of time. When I have asked why my fellow brother's that are stage 4 are not taking Darolutamide, the answer consistently is that their insurance will not pay for it. If your insurance pays for Darolutamide then consider talking to your provider. Darolutamide also does not break the blood brain barrier, so you will not have the brain fog that comes with the other ARSI's. I am a hard core software developer and since taking Eligard along with Darolutamide I have had no issues other than hot flashes and some fatigue.

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@wooldridgec

I recommend talking to your doctor about switching to Darolutamide. The efficacy of Daralutamide is outstanding and the clinical trials have consistently shown this drug out performs the other Androgen receptor signaling inhibitors (ARSI) (i.e., Abiraterone, Apalutamide, and Enzalutamide). For me personally, I would not want to be on prednisone for long periods of time. I understand I had to take prednisone daily while on chemo, but beyond that, I prefer not to be on prednisone for long periods of time. When I have asked why my fellow brother's that are stage 4 are not taking Darolutamide, the answer consistently is that their insurance will not pay for it. If your insurance pays for Darolutamide then consider talking to your provider. Darolutamide also does not break the blood brain barrier, so you will not have the brain fog that comes with the other ARSI's. I am a hard core software developer and since taking Eligard along with Darolutamide I have had no issues other than hot flashes and some fatigue.

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After 2.5 years on Zytiga I switched to Darolutamide, due to Zytiga giving me afib 3 times, the third time put me in the hospital for 4 days, doctors couldn’t stop it. My Oncologist did stop further issues by switching me to Darolutamide.

While on Zytiga my PSA stayed low but was only undetectable one month for all that time.

Now on Darolutamide I have been undetectable for 10 months.

While Darolutamide costs about $12,000 a month, on Medicare I paid $2300 the first month and then nothing for all my drugs for the rest of the year. In 2025 the maximum will be $2000. There are also a lot of ways to get discounts on this drug, Bayer also has a program providing huge discounts.

The thing is, studies have shown that starting on Zytiga gives the longest time without problems. Here is a link to an article that discusses the best sequence.
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30688-6/abstract?mc_cid=c2dca8aa74&mc_eid=99575fc699

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@wooldridgec

I recommend talking to your doctor about switching to Darolutamide. The efficacy of Daralutamide is outstanding and the clinical trials have consistently shown this drug out performs the other Androgen receptor signaling inhibitors (ARSI) (i.e., Abiraterone, Apalutamide, and Enzalutamide). For me personally, I would not want to be on prednisone for long periods of time. I understand I had to take prednisone daily while on chemo, but beyond that, I prefer not to be on prednisone for long periods of time. When I have asked why my fellow brother's that are stage 4 are not taking Darolutamide, the answer consistently is that their insurance will not pay for it. If your insurance pays for Darolutamide then consider talking to your provider. Darolutamide also does not break the blood brain barrier, so you will not have the brain fog that comes with the other ARSI's. I am a hard core software developer and since taking Eligard along with Darolutamide I have had no issues other than hot flashes and some fatigue.

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"The efficacy of Daralutamide is outstanding and the clinical trials have consistently shown this drug out performs the other Androgen receptor signaling inhibitors (ARSI) (i.e., Abiraterone, Apalutamide, and Enzalutamide)."

That's helpful information, but I think it needs a bit more detail. As far as I know, there are no head-to-head studies between Daralutamide and Apalutamide for my metastatic castrate-sensitive prostate cancer, for example. A secondary study (always tricky because of methodological differences) found no survival benefit of one over the other for mCSPC, but there was a slight reduction in secondary injuries from things like falls under Daralutamide.

For non-metastatic castrate-resistant prostate cancer, the DEAR study did show a statistically-significant survival advantage for Daralutamide over Apalutamide (median age of participants was 79–80), so if you fit that profile — you're older and your PSA is rising despite ADT, but there are no detectable metastases yet — it might be worth talking to your oncologist about Daralutamide.

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@northoftheborder

"The efficacy of Daralutamide is outstanding and the clinical trials have consistently shown this drug out performs the other Androgen receptor signaling inhibitors (ARSI) (i.e., Abiraterone, Apalutamide, and Enzalutamide)."

That's helpful information, but I think it needs a bit more detail. As far as I know, there are no head-to-head studies between Daralutamide and Apalutamide for my metastatic castrate-sensitive prostate cancer, for example. A secondary study (always tricky because of methodological differences) found no survival benefit of one over the other for mCSPC, but there was a slight reduction in secondary injuries from things like falls under Daralutamide.

For non-metastatic castrate-resistant prostate cancer, the DEAR study did show a statistically-significant survival advantage for Daralutamide over Apalutamide (median age of participants was 79–80), so if you fit that profile — you're older and your PSA is rising despite ADT, but there are no detectable metastases yet — it might be worth talking to your oncologist about Daralutamide.

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But also, if what you're on has been working for a few years and the side-effects are tolerable, you might want to think hard about switching to something new for a small hypothetical statistical benefit. After all, you already know that the current treatment works for you, just like you already know the result of a coin toss after you've done it, so you're not starting ab-initio like the studies. You could end up in the cadre that the new treatment *doesn't* work for. 🙁

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@northoftheborder

"The efficacy of Daralutamide is outstanding and the clinical trials have consistently shown this drug out performs the other Androgen receptor signaling inhibitors (ARSI) (i.e., Abiraterone, Apalutamide, and Enzalutamide)."

That's helpful information, but I think it needs a bit more detail. As far as I know, there are no head-to-head studies between Daralutamide and Apalutamide for my metastatic castrate-sensitive prostate cancer, for example. A secondary study (always tricky because of methodological differences) found no survival benefit of one over the other for mCSPC, but there was a slight reduction in secondary injuries from things like falls under Daralutamide.

For non-metastatic castrate-resistant prostate cancer, the DEAR study did show a statistically-significant survival advantage for Daralutamide over Apalutamide (median age of participants was 79–80), so if you fit that profile — you're older and your PSA is rising despite ADT, but there are no detectable metastases yet — it might be worth talking to your oncologist about Daralutamide.

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This article in JAMA shows a comparison of the Lutamides

Search this title and you will find the article

Androgen Receptor Inhibitors in Patients With Nonmetastatic
Castration-Resistant Prostate Cancer

The studies purpose is to find

‘What are the clinical use and outcomes of the androgen receptor inhibitors (ARIs) darolutamide, enzalutamide, and apalutamide in US patients with nonmetastatic castration-resistant prostate cancer (nmCRPC)?”

This may not be as complete as we’d like to see, but it is a start of a comparison of the three products and favors Darolutamide.

And then the question comes up “if someone has their metastasis zapped with SBRT are they actually non-metastatic now”!!!??

While it refers to nmCRPC many doctors are suspecting that some people that are listed as non-metastatic actually are metastatic, just that the metastasis are too small to detect yet.

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@jeffmarc

This article in JAMA shows a comparison of the Lutamides

Search this title and you will find the article

Androgen Receptor Inhibitors in Patients With Nonmetastatic
Castration-Resistant Prostate Cancer

The studies purpose is to find

‘What are the clinical use and outcomes of the androgen receptor inhibitors (ARIs) darolutamide, enzalutamide, and apalutamide in US patients with nonmetastatic castration-resistant prostate cancer (nmCRPC)?”

This may not be as complete as we’d like to see, but it is a start of a comparison of the three products and favors Darolutamide.

And then the question comes up “if someone has their metastasis zapped with SBRT are they actually non-metastatic now”!!!??

While it refers to nmCRPC many doctors are suspecting that some people that are listed as non-metastatic actually are metastatic, just that the metastasis are too small to detect yet.

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Yes, I think that's the DEAR study I mentioned in my post for nmCRPC. It will be interesting when we have comparison studies of the *lutamides for my mCSPC and other scenarios, but until then, it's a bit tricky trying to extrapolate beyond what's actually been studied.

After all, one of the proven benefits of Apalutamide is delaying the progression from castrate sensitivity to castrate resistance for metastatic cancer in the first place (the TITAN study), while the DEAR study is about delaying the progression to metastatis. You're right that it could possibly end up that one *lutamide is better at both.

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@northoftheborder

Yes, I think that's the DEAR study I mentioned in my post for nmCRPC. It will be interesting when we have comparison studies of the *lutamides for my mCSPC and other scenarios, but until then, it's a bit tricky trying to extrapolate beyond what's actually been studied.

After all, one of the proven benefits of Apalutamide is delaying the progression from castrate sensitivity to castrate resistance for metastatic cancer in the first place (the TITAN study), while the DEAR study is about delaying the progression to metastatis. You're right that it could possibly end up that one *lutamide is better at both.

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I missed the fact you were looking for a comparison with mHSPC. I guess that since Darolutamide was only approved for mHSPC on 8/5/2022 it may take a while for studies to be completed. The study you refer to as the Dear study does have some points that would seem to apply to all PC patients. Like it being easier to tolerate.

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@jeffmarc

Most people don’t have problems with liver enzymes. I was on abiraterone for 2 1/2 years and never had an issue, but they checked it every month.

I know some people have reduced it to three pills and even two pills and still had good results. For me, I reduced it to three pills and in 18 days, my PSA went from .2 to 1. Not very successful.

If you try to reduce it, make sure to get a PSA test real soon. With a Gleason nine your body may not like less than four pills.

After Abiraterone, when your PSA rises, you can try Darolutamide, it doesn’t affect the liver as much, normally, and the side effects are minimal for most people.

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Thanks for your comments.
Yes, I have had to adjust my dosage to 3 abiraterone per day because of liver enzyme issues. However, my PSA has remained at 0.0 for the last 4 blood tests. Hopefully we hold that pattern. Although I was Gleason 9, it was localized and the PET scan showed no metastasis. I began with 30 days of photon radiation

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