We need others' info on Stage 4 prostate cancer.

I think he needs ORGOVYX too..ask your oncologist...with Stage IV metastic, he might even need triplet ( chemo) as well...
I have Stage IV, am on Orgovyx and Nubeqa and had 45 EBRT sessions..I think your hubby definitely may need radiation too..

But dont lose hope, many on this site have similar and recovered ! you may need to change oncologists tho..

I've been on Erleada since 2021 for bone-metastatic stage 4 prostate cancer, combined with androgen-deprivation therapy (ADT).

I've personally never heard of Erleada causing an initial testosterone (and perhaps, PSA) flare up. It is common for some types of ADT to trigger a flare: GnRH agonists like Lupron and Eligard do it, while ADT GnRH antagonists like Orgovyx and Firmagon do not.

My PSA was initially 67.9. Firmagon + Erleada reduced it to to 11.6 in under 3 weeks, and to undetectable in a couple more months (where it has remained for over 4 years). But every patient responds differently.

It would be very unusual for somebody to only be on Erleada, As others have pointed out. You always wanna be have somebody on at least double therapy with a ADT plus anARPI (Erleada). The most common types of ADT are Lupron, Orgovyx, Firmagon or Eligard. Did your doctor discuss those with you?

Was this a choice you or your husband made that they didn’t want ADT? It does have a lot of side effects, but I’ve been on it for eight years and I’m 78 and have no significant problems with it. Some people do have a lot of issues.

Erleada is apalutamide, It works quite well, but has some side effects that are troublesome For some people. Some people get fatigue from it, for example. Nubeqa (Darolutamide) Has almost no side effects for most people, Fatigue is extremely unusual. If he has a problem with that drug, he might ask the doctor about whether it’s worth switching.

@jeffmarc
I forgot to mention that he is on Lupron shots every 3 months. Thanks for your input. Makes us feel hopeful that we can beat this.
The doctor explained to us that decreasing the testosterone in his body (so the spread will stop )will have the side effects of functional decline. He is experiencing weakness, low RBC's, low hemoglobin, etc but I am thankful that his appetite remains good at this time. Since he just started this treatments, the oncology team continues to observe and no changes at this time.

@northoftheborder
That is amazing! God bless you. I will definitely mention the Firmagon to his oncologist on his next visit. So how are you doing now? Did the pain go away? My husband had severe pain due to the bone-metastasis during the first month. So far the pain has become more tolerable after treatment and with pain management ( Oxycodone and Morphine).

@xahnegrey40
We are hopeful especially hearing from all of you who are experiencing the same diagnosis.
Focus radiation was recommended and by next week, we'll have a definite date/plan. He has lesions on his left femur which is causing the pain when he walks. He uses a walker in the house and I push him on a wheelchair when we go for his doctor's visit, labs, and occasional outing.
How is your condition now? When were you diagnosed? I pray and hope that you will recover completely. God bless.

Hi. I had metastatic PC show up on my hip around March 25. This was my 3rd reoccurrence since getting initial PC surgery in Dec. 18. About a year after surgery, I had radiation to the prostate bed and began ADT for 2 years. After I got off the ADT treatment and my PSA began to rise again, I had radiation to a lymph node and started ADT again for 18 months. I was Gleason 4+3=7 with a tertiary score of 5 (which I was told was aggressive).

My last treatment included starting Lupron and Nubeqa in April 25, then 6 chemo infusions from June to October. It's been less than 6 months since chemo, but my PSA remains undetectable.

I wish you and your family the very best of luck!

My husband was diagnosed stage 4 in January.
He had been to his GP several times the year previous indicating something wasn’t right and he didn’t feel well. His GP never did any full work up.
Long story short, by October he was in pain from a slipped disc from moving some tires (maybe, or just the cancer, not sure) - lower back and right leg. By mid December he could barely walk and was using a cane. Shooting nerve pain down his leg, pain in his back, and he couldn’t get comfortable.
I ended up taking him to the ER where the Dr listened and ran tests and a scan, which led to more tests and scans.
PSA over 900, metastasis in the nodes in the area, in the spine… Gleason 8…
Even before biopsy, they started him on Orgovyx (Relugolux) and within a week he felt the difference. In a few weeks, the cane was almost gone.
His PSA dropped by 2/3 by the next blood test. They started Triple Therapy in February, adding darolutamide and docetaxel.
His last PSA was just over 10.
He just had 5 radiation treatments last week to his lower back for that will hopefully knock out the residual back pain (it’s made a difference and the inflammation from the treatment isn’t totally gone yet).
He has fatigue and often has to take a nap, but is starting to get out for short walks and using a stationary bike to help build up strength in his legs.
Round 3 of 6 with the docetaxel is later this week.
His team of oncologists are encouraged by the results so far.
We feel hopeful.
Don’t get me wrong, I am still pretty freaked out at times!

I hope your husband responds well to his treatment. Take care of yourself, too.
I’m no expert by any stretch of the imagination. I am a concerned wife and if you ever want to reach out, please do.

@mcnobles77
I’ve had low RBC and low hemoglobin for about eight years, The time that I’ve been on Lupron and Orgovyx. It’s not ever been low enough to Cause anemia. Just one of the side effects of these drugs cause

@mcnobles77
Firmagon has some major drawbacks. You need to get an injection in the stomach every month. For many people, it causes pain for a few days after getting the injection. The problems get worse over time.

If a Lupron shot is given in the hip, it causes almost no problems for the majority of people. I got them Every six months for six years, Unless I pressed into the spot where I got the shot, it never bothered me.

Orgovyx is an antagonist just like Firmagon (Lupron is an agonist). Essentially, they work the same, but Orgovyx Is a pill you take once a day. Much easier than Firmagon.