Starting Hormone Therapy

My husband has metastatic castrate resistant PC, and it's my understanding that Nubeqa/darolutamide is only approved for non-metastatic or metastatic castrate sensitive PC. Pluvicto was only moderately successful for my husband, and his cancer is not back into remission. I am wondering what people have heard about next steps in treatment for someone in his situation.

I am metastatic castrate resistant. I am on Darolutamide as are many other people I know that are also mCRPC. A lot of doctors don’t consider nmCRPC To be real. If you are castrate resistant, it is very likely you are also metastatic, If you can’t see it, it’s still too small to be seen yet.

Being castrate resistant is decided when your PSA starts to rise, even though you are on ADT. The only way your PSA is going to rise is if you have prostate cancer growing somewhere.

A huge number of doctors will prescribe this for you, If yours won’t, it sounds like you need to find a different physician. They will usually try to give you Enzalutamide, because some people on it have no side effect problems. You need to ask, saying Emphatically what you wish.

First - a big hug. My husband was diagnosed two years ago Gleason 4 + 5. He underwent radiation followed by what will be 2 years of Abiraterone + Prednisone and Lupron Depot. He has done fine - usual side effects but not horrible. Hot and cold flashes. He is 81. We are worried about what will happen after we stop the hormone therapy, but regarding your questions - it isn’t too bad to go through all of it. My husband doesn’t drive any longer because of glaucoma, we were in this together and are a team - you two will be a good team!

Thanks for the information--I am happy to hear that doctors will prescribe Nubeqa/Darolutamide for men who are castrate resistant in spite of what the official approval documents say. My husband finished Pluvicto in August 2024, and started Xtandi when the Zytiga stopped working after three years. The side effects of the Xtandi were so bad that he stopped taking it after about a month. We haven't yet asked the local (Indianapolis) medical oncologist about getting Nubeqa, but we see him on July 15 and will do so at that time. We also haven't asked Dr. Kwon at Mayo about it, but we see him in mid-September, and will ask him about it at that time, if not sooner via the portal, after we hear what the local medical oncologist has to say about it.

I’ve heard from people that have been giving advice about prostate cancer for 15 years that if you switch from abiraterone to a lutamide after abiraterone fails (Your PSA starts rising) There’s only a 5% chance it works.

I took abiraterone For 2 1/2 years. It was pretty hard on my heart, And the side effects were definitely worse. During that 2 1/2 years my PSA was only undetectable one month. I went on Darolutamide And my PSA has been undetectable for 19 months, starting three months after I began Darolutamide. It also has a lot fewer side effects than abiraterone.

I mentioned all this because at 81 your husband needs to have the least side effects he can handle. Switching now may benefit him more than switching after Abiraterone fails.

Ask your doctor about it.

I was diagnosed with stage 4 metastatic prostate cancer on February 28, 2022. I started going to the Mayo clinic in April. I was not a candidate for a prostatectomy, but I did need a TURP (Rotorooter). Because I wasn't a candidate for surgery I was referred to Radiology.
I was scheduled for radiation treatment and started on Firmagon, then later Lupron on May 3.
In June I had a TURP. The next day was started on Xtandi. Stayed on both Lupron and Xtandi until this past May. So I was on an hormone for 3 years.
It has been an interesting three years.
I was already a big boy but gained weight, lost the hair on my chest, belly, back and armpits. My boy parts atrophied, I was tired and my body and joints aches.
No one is the same as anyone else. My suggestions to anyone starting ADT/ARI ;

Do not be afraid to seek mental health help,
Lose weight, talk to dietician who understands hormone therapy,
Get exercise walking does help, I didn't do resistance training but should have,
Your relationships may change, don't let go of them,
Meditate, the form is up to you, my choice is faith based, but doesn't have to be,
Sounds cold but, this shit sucks, get over it and move on. You can and you will survive.
In the two months that I've taken a break from treatment if gotten a lot of energy back, I'm not as fatigued as I was. I don't hurt as much, my joints in particular. I'm starting to lose some weight, and build back some muscle mass.

One final thought, at the beginning of this I remembered what my grandmother and my aunt used to say every morning, "this is the day that the Lord has made, let us rejoin and be glad in it". My beloved wife had a stencil made of it and it's on our bedroom wall, where I see it every morning. It doesn't say a good day, or a bad day, it just says day. I had to learn that it doesn't matter what the day bring, rejoice and be glad in it. I don't hate the cancer. Because of the cancer I have become closer to my wife, and to my God. I can rejoice and be glad in it, well most of days.

Fred, you have a great attitude. Thank you for the encouraging words. Best,
Phil