1. < Prostate Cancer

Stage 4 Prostate Cancer and Hormone Therapy quit working

Posted by cal77 @cal77, Oct 28 12:48pm

My husband is at Stage 4 for one and a half years now...The hormone therapy (Apalutamide and Erleada) seems to have quit working. For the past 8 months, his PSA keeps climbing. It's up to 12 now..
We're scared. Anyone else got to this point? How are you doing when the hormone therapy isn't working anymore.

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melcanada | @melcanada | Nov 13 4:04am
In reply to @lag "Zytiga kept my husband's Stage 4 cancer suppressed for three years. It varies a lot between..." + (show)
@lag

Zytiga kept my husband's Stage 4 cancer suppressed for three years. It varies a lot between men--some don't respond to it at all, and the average according to our medical oncologist is 18 months, while others get a longer remission.

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Is he still with us and what is he on now?

Was something better than Zytiga if you did it again?

Was C mets only in bones like mine or had it spread outside the bones to where?

I start something in Dec after Chemo gave me fluid on lungs so have to stop it

80 feel great Had prostae radiated out 2017 Then L1 radiated 2020 Then Xtandi, then Radium 223 and 2 chemo's

Must take Xgeva to push 600mg calcium back into bone pot holes caused by killing C with chemo

Chemo also gave me PSA flair from 40 to 7000 google PSA flair 30% get it

Also get Zolodex shots to lower testosterones FYI

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northoftheborder | @northoftheborder | Nov 13 4:01am
In reply to @melcanada "Why do you need Orgovyx with Apalutimide ? Oh I see its like Zolodex to reduce..." + (show)
@melcanada

Why do you need Orgovyx with Apalutimide ? Oh I see its like Zolodex to reduce testosterones Zolodex is 1/3 the price of O

I see it works very fast Is it really that better than Zolodex I get my 3 moth injection Tomorrow at home from a RN of Zolodex

I got PSA flair up with chemo PSA shot 49 to 700 from 41 Google 40% on chemo can get get PSA flair I hear its serious if it does not go down

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I started on Firmagon (Degarelix) in 2021 because I was in a precarious situation after my PCa spread rapidly to my spine and paralysed me, and we needed to bring my testosterone down as fast as possible with no initial testosterone flare and minimal extra meds (I was already on a witches brew of steroids, blood thinners, insulin, etc trying to bring down the swelling in my spine, control DVT in my legs, and manage the steroid-induced diabetes).

Firmagon+Erleada (Apalutamide) have been working remarkably well to keep my mCSPC in full remission, but the immediate side effects from each monthly Firmagon shot were tough.

Orgovyxv (Relugolix) is a GnRH receptor antagonist just like Firmagon, but in daily pill form, and costs the same (about CA $325/month, though I haven't had to pay), so I wasn't nervous that I was taking a risk by switching.

Orgovyx seems to have become the standard ADT in the U.S. In Canada, it's still very new (Pfizer just got Health Canada approval less than a year ago), but they've priced it the same as Firmagon, and have a patient-access. programme to cover the cost until it gets added to the provincial formularies.

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2 replies
northoftheborder | @northoftheborder | Nov 13 3:41am
In reply to @hbp "Northoftheborder. You mentioned that the Erleada titan trial did not “reach medium overall in 4.5 years”I..." + (show)
@hbp

Northoftheborder. You mentioned that the Erleada titan trial did not “reach medium overall in 4.5 years”I am in that trial at UCLA and I am coming up on my 40th month. I don’t understand what you mean by “reached medium overall”. Could you please explain that phrase to me.

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I meant "median overall survival" — apologies for dropping a word.

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hbp | @hbp | Nov 12 9:57pm
In reply to @northoftheborder "Like all the -lutamides, Apalutamide can be very effective — so much so that they had..." + (show)
@northoftheborder

Like all the -lutamides, Apalutamide can be very effective — so much so that they had to unblind the TITAN trial because it was unethical to keep half the participants on placebo. That study didn't reach median overall in its 4½ years, even (IIRC) counting those who had started on placebo and then switched and those who had become castrate-resistant during the trial, because the participants just kept living so darned long. 🙂

Erleada (Apalutamide's brand name) is in the Ontario formulary, so your ODB should cover it without having to mess with the extra paperwork around joining a patient-access programme or getting authorisation from private insurance (which is important, since it would cost nearly CA $5,000/month otherwise).

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Northoftheborder. You mentioned that the Erleada titan trial did not “reach medium overall in 4.5 years”I am in that trial at UCLA and I am coming up on my 40th month. I don’t understand what you mean by “reached medium overall”. Could you please explain that phrase to me.

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1 reply
wellness100 | @wellness100 | Nov 12 6:43pm

The standard of care is triplet, which means ADT plus another hormone plus chemo and or radio. If you have not had a PSMA PET/CT scan, you should have one. It is a very useful tool.

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lag | @lag | Nov 12 5:07pm
In reply to @melcanada "Does it always fail How long does it work I see some with OS in years" + (show)
@melcanada

Does it always fail How long does it work I see some with OS in years

Jump to this post

Zytiga kept my husband's Stage 4 cancer suppressed for three years. It varies a lot between men--some don't respond to it at all, and the average according to our medical oncologist is 18 months, while others get a longer remission.

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1 reply
melcanada | @melcanada | Nov 12 4:03pm
In reply to @jeffmarc "Bat would be after Zytiga fails." + (show)
@jeffmarc

Bat would be after Zytiga fails.

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Does it always fail How long does it work I see some with OS in years

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jeffmarc | @jeffmarc | Nov 12 2:52pm
In reply to @melcanada "Think Oncologist is going Zytiga. He did not know of BAT Raising testosterones and faking it..." + (show)
@melcanada

Think Oncologist is going Zytiga. He did not know of BAT Raising testosterones and faking it to trick C cells

Would BAT be next option after Zytiga?
Plan travel to Sandals Moe Bay in Jan Have great health insurance Hope side effects would not put issues on me? Thoughts?

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Bat would be after Zytiga fails.

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melcanada | @melcanada | Nov 12 2:28pm
In reply to @jeffmarc "I don’t see you mentioning having Pluvicto treatments. That is usually the next step. It doesn’t..." + (show)
@jeffmarc

I don’t see you mentioning having Pluvicto treatments. That is usually the next step. It doesn’t work at all for 1/3 of people, but it is very successful for 1/3.

Not sure what you mean by big prednisone. Not sure if you have been on Zytiga which requires you take 5 mg of prednisone. That might work for you, it might not, you need to ask your oncologist if it makes sense.

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Put me on 80mg to stop fluid in lungs after Chemo Now being reduced

Had Radium 223 6 moth then PSA up Did not ger Lu 177 trial

Now plan as chemo failed is Zytiga or apalutimide

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melcanada | @melcanada | Nov 12 2:06pm
In reply to @northoftheborder "I'm so happy to hear that your lungs are improving! As far as side effects go,..." + (show)
@northoftheborder

I'm so happy to hear that your lungs are improving!

As far as side effects go, it's very personal again. I've tolerated Apalutamide well for the past few years; others here in the forum have found its impact on their lives almost catastrophic.

In the end, the right medication is the whatever keeps YOUR cancer in check and doesn't prevent YOU from living a fulfilling life. I was lucky to hit that on the first try with the Apalutamide (and ADT to some extent, but Firmagon really did knock me out for 2-3 days every month, so switching to Orgovyx gave me a nice quality-of-life boost).

When you find a treatment works for you, stick with it until it stops working, whatever the stats say (they're just aggregates, and don't apply to every single person).

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Why do you need Orgovyx with Apalutimide ? Oh I see its like Zolodex to reduce testosterones Zolodex is 1/3 the price of O

I see it works very fast Is it really that better than Zolodex I get my 3 moth injection Tomorrow at home from a RN of Zolodex

I got PSA flair up with chemo PSA shot 49 to 700 from 41 Google 40% on chemo can get get PSA flair I hear its serious if it does not go down

REPLY
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