Nubeqa (Darolutamide) versus Zytiga versus Estradiol Patches

Boy, are you being given a real story. Don’t understand why you weren’t told the truth.

I was on Zytiga for 2 1/2 years. Its side effect are numerous. Gave me high blood pressure, Four instances Of afib, one landing me in the hospital for four days. Made my hot flashes much more severe. There are a lot of issues with Zytiga, but it’s a good starting point if you can handle the side effects. While I was on it, I was only undetectable for one month in 2 1/2 years. I do know people that Were on it for five years And it worked well for them. There were a lot of side effects still.

I switched to Nubeqa And have been on it almost 3 years. It has Almost no side effects at all. I’ve not noticed even one. Even though I am still on ADT, my hot flashes have stopped. I’ve had no Afib events and I’ve been able to reduce my blood pressure meds. Nubeqa Is the best of all of the ludamides. It doesn’t pass the Blood brain barrier like all the others so it doesn’t cause brain fog. I’ve been undetectable for 26 months while I’ve been on it.

Nubeqa has been approved for pretty much all different types of prostate cancer. There is a question about whether it is approved for metastatic castrate resistant prostate cancer. That’s what I have and it’s what I’ve been taking it for.. It is approved for castrate sensitive prostate cancer.. It is around $12,000 a month, so you do have to have your insurance pay for it. Medicare covers it.

Yes, a problem with estradiol is that it can cause heart issues. If you have BRCA2, you cannot use it at all. To prevent breast enlargement, you can have radiation to the chest.

@jeffmarc ugh. That’s what I thought too.

What would you do? I put in a request for another in person appointment as I didn’t feel we had adequate time to ask and have our questions answered. Of course, new questions post visit that I now want answers for. I feel like I now can go to another appointment with my questions written down and be more focused and prepared. There was also a, “fellow” there to observe the process etc. and it was somewhat of a distraction.

I am definitely not satisfied with her decision or answer as to why she couldn’t or won’t prescribe Nubeqa. I want answers. Concrete answers. As far as his insurance, he has good insurance in addition to Medicare so I am not too concerned about the cost of the drug, God willing.

Please advise what you would do as your next step? I have put in a request for another in person appointment. I have yet to reply to her message via the COH portal.

Thank you in advance.

@jeffmarc I wonder if she saying that the Nubeqa isn’t approved for his situation due to his stage? If two lymph nodes were shoddy, would that be a reason why she says it won’t work? The fact that it has spread outside of the prostate area? The fact that it’s metastatic at this point? Is Nubeqa not approved for metastatic PCa?

@sriddle1
It is approved for Metastatic castration-sensitive prostate cancer (mCSPC).

I don’t suppose you are castrate resistant yet. It is approved for that too.
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-darolutamide-metastatic-castration-sensitive-prostate-cancer
I have found that when I want my oncologist to give me something different I ask for it. I don’t equivocate. I don’t ask if it’s OK I ask for it.. That’s because I know what the guidelines are and that it will be covered by insurance.

If you can’t get anywhere with this doctor, you might want to try getting a second opinion from a center of excellence.

Is your partner having a real problem with side effects of Zytiga? Like I did.

@jeffmarc thank you. I will ask her why he can’t have that. She made it sound like it wasn’t compatible with his disease and stage.

He has not yet started any type of treatment at this time except for his RP in October 2025. We just only met with her last week. She is MO at City of Hope where he is being treated. She has quite the resume too. I am just trying to figure out how to approach this. She will have to explain to us why he can’t be on Nubeqa as I can’t see a reason with the info I’m hearing and your response too.

Also, why is it that more men aren’t on Nubeqa? It seems are on Zytiga? Is that the case or just my assumption? I hear so many men having terrible side effects from the ADT meds and mostly read that it’s the Zytiga.

Thanks for your input and advice.

One very important point to note about Abiraterone (Zytiga) is that it's an older ARSI that requires the patient to take the steroid Prednisone with it.

While many patients tolerate steroids fine, others experience a whole range of side effects, even if they can tolerate the Abiraterone itself.

Personally, I've experienced steroid-induced diabetes when on steroids to try to take down the swelling in my spine (I had to go on insulin in the hospital until they finally took me off steroids); others experience heart problems, etc.
https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/description/drg-20075269
Newer ARSIs like Darolutamide and the other -lutamides don't require a steroid, but they cost many thousands of dollars/month, while Abiraterone is out of patent and generics cost as little as U.S. $30/month.

So it's no surprise that U S. insurers push patients towards Abiraterone as a "still good enough" default treatment, and in some cases might force doctors to work hard to justify a more-expensive drug (or penalise them if they prescribe it too often? I'm not sure how things work down there).

@northoftheborder , maybe that’s her issue? Cost, her kickbacks, etc. I am still waiting and seeing how I approach. I’d really like to know why she said, “it’s not approved in this situation.”

What ADT medicine did or do you take? How are/were the side effects now that you’re off Zytiga? Or did they just remove the Prednisone?

Thank you

My hubby is on Nubeqa and Orgovyx for his stage 4 PC. He has very few side effects from this combo. Very occasional hot flashes and some fatigue. Since he previously had a heart attack 8 yrs ago, he does get monthly EKG's to monitor him for Long QT syndrome. He has been on this regimen for 8 months now and after 6 cycles of Docetaxel, he is currently in "remission". I might add we had to fight for the Orgovyx over Lupron. Oncologist said "Insurnace isn't going to pay for that" and I told him we weren't going to go with that answer without checking into it first. Low and behold insurance pays for it. After many issues with that Onco, we now have a new one that listens to us better. But the new one even said "Your my only patient on Orgovyx". I asked why but he didn't have an answer outside of that's how we've always done it.

@rdslmks, thank you for your reply. It sounds like I will just need to be steadfast in my persistence and advocate for the drug we want. If we need to switch to another oncologist, so be it. I am absolutely not going to have him start Zytiga at this point.

Off to fight the fight.

@sriddle1
The question comes down to is he castrate resistant! Since he has not been treated yet, he is castrate sensitive, not castrate resistant.

If still castrate sensitive, then it is approved for metastatic disease, which he apparently has. I did say that it was approved for all castrate sensitive people.