Stage 4 Metastatic - what to expect after 6 months?

@kitlund
Orgovyx can be pretty hard on someone 80+. Due to your BPH, I wonder if your prostate is over around 75 cc. During one of the monthly meetings the Mayo radiation oncologist said that he didn’t like to radiate a prostate over 75 cc. Hopefully Orgovyx can bring it down So they can do radiation. Maybe the HoLEP can reduced it enough.

Once you’ve had radiation getting off Orgovyx Would be a good idea since it can cause a lot of side effects and fatigue can be difficult for many people. I know and a lot of guys in their 80s that are on Nubeqa alone. It works really well to keep the PSA down and prevents the testosterone from helping the cancer grow. Something to discuss with your doctor.

I was having a problem getting up too many times at night, I’d wake up and feel like I had to go and I knew damn well I didn’t. I’m now taking Myrbetriq And I usually don’t get up at all at night anymore. I’ll be laying in bed reading after I wake up and maybe wait a half hour or 45 minutes before I get up go pee. No urgency any more. Gemtesa is supposed to work similarly. My urologist was real helpful when I asked about getting one of the drugs.

My PSA wasn't as high, and my cancer was oligometastatic (few metastases), but otherwise, I was almost the same age as you (56 in my case) when I got a diagnosis of stage 4b prostate cancer in 2021.

My cancer is in full remission now, 4 1/2 years later. I had surgical debulking (since the tumour compressed my spine and left me paraplegic for a while), post-op radiation to my spine (instead of chemo), and radiation to my prostate.

I've been on ADT (first Firmagon, then Orgovyx) and Erleada (another -lutamide, like Nubeqa) since 2021, and they been successful at keeping my cancer under control. Truly miracle drugs.

I've had to adjust to life without testosterone and to the permanent nerve damage to my spine (learning to walk again from scratch at age 57 was quite the experience), but overall, I'd say life is good as I approach the 5 year mark. But living with stage 4 is a big emotional adjustment, and it will probably be another year or two before the rollercoaster of emotions settles down a bit.

Best of luck! ❤️

@northoftheborder ,did you have neuropathy in legs after surgery?

Hey! Welcome to the club.
My husband is in a similar situation as you. PSA was almost 300 at diagnosis and Gleason scores were mostly 8 and 9s and psma scan showed all over his body! He was diagnosed a year and a half ago at 55 as well.
He started firmagon and zytiga and did docetaxel last summer.
He was supposed to switch to lupron but decided to stay on it. His numbers are good (PSA is 0.05) and psma scans are better too. We spoke to radiology but decided to wait and see. He's not in pain, exercises daily, eats pretty perfectly and looks fine overall.
He sleeps like crap and no sex life and he still gets hot flashes too though a bed jet has helped with night sweats.
Back when he was diagnosed the stats said 30% make it 5 years! We'll see.
It totally sucks!

@beaquilter Bea, I remember when you first came on the forum. It seemed like you and your hubby were in a nightmare - literally!
Yet, here you both are - thanks to your steadfast support and research into his condition - doing what has to be done no matter how much it sucks😩.
I also remember your husband being somewhat stubborn in his views and that was probably the hardest part for you - trying to tell a man how to go about treating a man’s disease!!
You have truly saved your man’s life and for that you should be proud. Your husband is a lucky man indeed in more ways than one! Hope the very Best for you both,
Phil

@heavyphil oh gosh (blushing)
It's so hard though. I'm on antidepressants now. Oddly enough the depression hit me a few months ago so maybe I was in survival mode for over a year and then it finally caught up to me.
Next thing is getting me stubborn to ask for sleeping pills of some sort.

@beaquilter Totally understandable, Bea, with what you’ve been through. How can you not be depressed, angry, resentful and all the rest? We all go thru it but your hubby’s case is a real bummer to deal with all alone.
I would caution you to not go down the sleeping pill route; it’s just treating the symptom, not the problem.
Some antidepressants can cause sleep issues so please talk with a knowledgeable provider to help you with this; perhaps a different medication.
Also, now that hubby is fairly stable, how about some ‘you’ time with a counselor or therapist?
You’re not crazy! You are human and you’ve been thru the wringer - PTSD can strike in many forms and cause a variety of problems.
Many of us on the forum - both patients and spouses - have gotten help with these issues and have come out better for it. Peace,
Phil

@canadaanne
Recent studies have found that treating the prostate in very aggressive cases has no benefit. Long-term progression free survival did not change.

Over at ancan.org Weekly online advanced prostate cancer meetings they have been recommending treating the prostate to everybody for years. When this came out about six months ago, they changed their tune and no longer recommend it with serious cases like your husband’s.

Ask your doctor about it. It may make sense, it may not. Has the treatment he has already had eliminated the need for it?

@northoftheborder ,did you have neuropathy in legs after surgery?