Trying to get Nubeqa instead of Zytiga/ prednisone

Posted by kcraff777 @kcraff777, 4 days ago

My dad’s (81) PSA went from .33 in February to 16 a few days ago. My dad likes to be very active and is currently on lupron but Urology wants him to start on Zytiga/ prednisone due to increased PSA. He’s on 2 blood thinners post heart attack 8 months ago and urosepsis 3 months ago. After researching the side effects it looks like Nubeqa is clearly better with less interactions and side effects. I asked the urologist if we could do Nubeqa instead, they said no because of increased bleeding risk. However, I cannot find that it interacts with blood thinners anymore than Zytiga. (including open evidence) I did schedule a second opinion with oncology research center in 1.5 weeks because of this.
Not sure how to navigate this? Should we wait to start it? Should I push Urology to prescribe Nubeqa, not sure why they are so against it?
He would like to have decent quality of life.

Not sure what to do? He’s supposed to pick it up on Monday.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

He has pelvic lymph node involvement and a few bone Mets. No ew symptoms. Gleason 4+5 3.5 years ago.

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All of the ARPIs have some cardiovascular risk (the attached chart is from a webinar I attended a couple of years ago).

Is his testosterone still being suppressed by the Lupron?

What treatments has he had for his Gleason 9(4+5) and bone mets?

Could something else have caused a spike in his PSA (UTI)?

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Zytiga is terrible for people with heart issues. I can’t believe the doctor has said he will prescribe it after having a heart attack. That drug gave me high blood pressure for which I have to take three pills twice a day now, after I started using it 5 years ago. I haven’t been on it for three years, but I’ve had two afib of events since I stopped And three while I was on it. It messed me up. I do know other people that have been on it for a while and have had no problems, But not people with heart issues. One guy I know was on it for five years, he had to have stents put in his heart after stopping.

I switched to Nubeqa Almost 3 years ago and it works great. I know a lot of people using it and almost no one has side effects. There is a problem, however, If you are castrate resistant and have metastasis, it is not FDA approved. In my case, my doctor doesn’t have to follow those approvals, because I’m In a Medicare advantage HMO. I know many people in their 80s that are using it as their only drug and it keeps their PSA undetectable.

I’ve been on a blood thinner for almost 5 years and it works great with Nubeqa. I’ve Had multiple surgeries where they had to put me under and I had to stop the blood thinner for a few days, but not Nubeqa.

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Profile picture for brianjarvis @brianjarvis

All of the ARPIs have some cardiovascular risk (the attached chart is from a webinar I attended a couple of years ago).

Is his testosterone still being suppressed by the Lupron?

What treatments has he had for his Gleason 9(4+5) and bone mets?

Could something else have caused a spike in his PSA (UTI)?

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@brianjarvis his testosterone is still being suppressed on Lupron, no UTI. I feel like the recent sepsis has something to do with it.

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Profile picture for Jeff Marchi @jeffmarc

Zytiga is terrible for people with heart issues. I can’t believe the doctor has said he will prescribe it after having a heart attack. That drug gave me high blood pressure for which I have to take three pills twice a day now, after I started using it 5 years ago. I haven’t been on it for three years, but I’ve had two afib of events since I stopped And three while I was on it. It messed me up. I do know other people that have been on it for a while and have had no problems, But not people with heart issues. One guy I know was on it for five years, he had to have stents put in his heart after stopping.

I switched to Nubeqa Almost 3 years ago and it works great. I know a lot of people using it and almost no one has side effects. There is a problem, however, If you are castrate resistant and have metastasis, it is not FDA approved. In my case, my doctor doesn’t have to follow those approvals, because I’m In a Medicare advantage HMO. I know many people in their 80s that are using it as their only drug and it keeps their PSA undetectable.

I’ve been on a blood thinner for almost 5 years and it works great with Nubeqa. I’ve Had multiple surgeries where they had to put me under and I had to stop the blood thinner for a few days, but not Nubeqa.

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@jeffmarc After all my research this is pretty much what I found. She has him as castrate sensitive but I think he may be becoming resistant. He’s also Medicare, with a great supplemental benefit. I am hoping the oncologist will prescribe Nubeqa instead. But I was going to present Urology with the fact that there’s no increase in bleeding with Nubeqa over Zytiga.

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Profile picture for kcraff777 @kcraff777

@jeffmarc After all my research this is pretty much what I found. She has him as castrate sensitive but I think he may be becoming resistant. He’s also Medicare, with a great supplemental benefit. I am hoping the oncologist will prescribe Nubeqa instead. But I was going to present Urology with the fact that there’s no increase in bleeding with Nubeqa over Zytiga.

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@kcraff777
As long as he’s castrate sensitive, he can get Nubeqa. You need to be proactive with that doctor and tell him that’s what you want. Do not accept zytiga, Tell the doctor, his heart is not up to that drug.

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Profile picture for kcraff777 @kcraff777

@brianjarvis his testosterone is still being suppressed on Lupron, no UTI. I feel like the recent sepsis has something to do with it.

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@kcraff777 That would be good to follow-up on.

Must be something like that, otherwise how could his PSA spike that much if his testosterone was still being suppressed?

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Profile picture for kcraff777 @kcraff777

@jeffmarc After all my research this is pretty much what I found. She has him as castrate sensitive but I think he may be becoming resistant. He’s also Medicare, with a great supplemental benefit. I am hoping the oncologist will prescribe Nubeqa instead. But I was going to present Urology with the fact that there’s no increase in bleeding with Nubeqa over Zytiga.

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@kcraff777 What is the Medicare Pt D (prescription drugs) plan? Both are pills covered by part D. Out of pocket is capped at about $2K per year but Zytiga & Prednisone is going to cost $200-$300 per month while Nubeqa is going to be over $10K per month. Usually need a medical reason to get approval. Some plans may have step therapy (Nubeqa only after Zytiga fails). When insurance tells you its not about the money you can be sure it is about the money.

From a medical point if the patient can stand Zytiga doctors like to use that first not only because it is cheap but because Nubeqa will almost always work when Zytiga stops working but if you start on Nubeqa going to Zytiga is rarely effective.

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Profile picture for jim18 @jim18

@kcraff777 What is the Medicare Pt D (prescription drugs) plan? Both are pills covered by part D. Out of pocket is capped at about $2K per year but Zytiga & Prednisone is going to cost $200-$300 per month while Nubeqa is going to be over $10K per month. Usually need a medical reason to get approval. Some plans may have step therapy (Nubeqa only after Zytiga fails). When insurance tells you its not about the money you can be sure it is about the money.

From a medical point if the patient can stand Zytiga doctors like to use that first not only because it is cheap but because Nubeqa will almost always work when Zytiga stops working but if you start on Nubeqa going to Zytiga is rarely effective.

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@jim18
Actually Zytiga is generic and I wasn’t paying more than about $40 for it.

Yes, my January order of Nubeqa Cost $.50 less than $2100 (This year‘s limit) So I didn’t have to pay anything for drugs for the rest of the year. Yes, that is expensive but worth it because of the lack of side effects, especially compared to Zytiga. He could also usually arrange to pay that over time.

There are a couple of other options for paying for Nubeqa. Bayer Has a deal with people that are lower income can get it for free. I know someone that’s gotten it for three years in a row for free.

Then there’s another option. Someone in this forum has come up with a website where they can get drugs at very low cost or pay nothing. Unfortunately, I did not capture the website somebody else reading this message may have been able to capture it and give you that information..

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Profile picture for jim18 @jim18

@kcraff777 What is the Medicare Pt D (prescription drugs) plan? Both are pills covered by part D. Out of pocket is capped at about $2K per year but Zytiga & Prednisone is going to cost $200-$300 per month while Nubeqa is going to be over $10K per month. Usually need a medical reason to get approval. Some plans may have step therapy (Nubeqa only after Zytiga fails). When insurance tells you its not about the money you can be sure it is about the money.

From a medical point if the patient can stand Zytiga doctors like to use that first not only because it is cheap but because Nubeqa will almost always work when Zytiga stops working but if you start on Nubeqa going to Zytiga is rarely effective.

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@jim18 Zytiga (Abiraterone) is now generic. You should not be quoted high prices like the ones you mention!

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