Newly diagnosed stage 4, how long on ADT before adding ARSI?

Thanks for the perspective North! I think the next time I meet I will just directly ask if he is delaying due to my dad's age or because that is his standard practice. I think that will at least make me understand his reasoning more clearly and I can make my assessments/judgements from there. He didn't phrase it that way when explaining, but maybe he was just trying to sugar coat my dad's age in front of him. Which is totally ok, but I took it more as not being as aggressive as I'd like to attack the situation. Obviously, he is just starting to get to know my dad and so I can sympathize from his standpoint not wanting to over prescribe a 83 year old that might not be in the best health for all he really knows. I'm obviously bias, but think my dad is doing good for a 83 year old and just has the normal slightly elevated stuff common for his age that is easily managed (blood pressure, cholesterol).

Sorry to hear your cancer had spread. Did you have any treatment before it spread? Like radiation or surgery? or hormone treatment. I also have been diagnosed with Gleason 9 but so far it has not spread?? I have had radiation and am on hormone treatment.

I am also stage 4 (spread to 3 lymph nodes) and Gleason 9, currently on Eligard every 3 months. Just started proton radiation and wondered if/what side effects you had. I have the expected fatigue but also dealing with nausea which was not a side effect I expected. Anyone else have nausea from radiation treatments?

I'm sorry to hear that. No, nausea was not at all a side-effect of my SBRT radiation (20 sessions to the prostate), but all of us respond differently. Hopefully you won't develop any of the side-effects that I *did* have, and the nausea will disappear quickly when the treatment finishes.

What were your side effects? I’m only a few days into a 38 day regimen.

Mine emerged a year later -- the side-effect that was most prominent was bladder irritation, which came to my attention with a string of urinary-tract infections and visible blood in my urine, then resulted in a difficult summer where I was nervous leaving the house for long because of bladder issues. At the worst point, I was waking every 20-30 minutes at night. A cystoscopy confirmed that the bottom of my bladder near the prostate looked angry and red compared to the rest, due from the radiation damage. A colonoscopy a year later confirmed the same for my rectum, but that hasn't caused any issue for me, aside from a bit of a mild burn after eating spicy food.

To get it under control, the urology oncologist I was referred to prescribed Myrbetriq (which eliminated most of the issue in a few weeks, once we had the right dose), and I reduced my intake of caffeine and carbonated beverages for a few months. The problem started in the spring, and by fall it was mostly cleared up, so I was able to start titrating off Myrbetriq. I still feel the irritation: it's probably permanent for me, but it's mild and has little impact on my daily life.

Note that long-term irritation is rare. In my case, with stage-4 cancer, it's good that the radiation wasn't overprecise, because that meant the radiation had a chance to attack cancer cells near the prostate as well as those in it. For most people who get urinary-tract irritation and incontinence, it starts a few weeks after radiation therapy and ends within a couple of months, and with proton therapy (which is highly-focused, and thus, wouldn't have been suitable for my stage of cancer), there's a good chance you won't experience it at all.

Mine emerged a year later -- the side-effect that was most prominent was bladder irritation, which came to my attention with a string of urinary-tract infections and visible blood in my urine, then resulted in a difficult summer where I was nervous leaving the house for long because of bladder issues. At the worst point, I was waking every 20-30 minutes at night. A cystoscopy confirmed that the bottom of my bladder near the prostate looked angry and red compared to the rest, due from the radiation damage. A colonoscopy a year later confirmed the same for my rectum, but that hasn't caused any issue for me, aside from a bit of a mild burn after eating spicy food.

To get it under control, the urology oncologist I was referred to prescribed Myrbetriq (which eliminated most of the issue in a few weeks, once we had the right dose), and I reduced my intake of caffeine and carbonated beverages for a few months. The problem started in the spring, and by fall it was mostly cleared up, so I was able to start titrating off Myrbetriq. I still feel the irritation: it's probably permanent for me, but it's mild and has little impact on my daily life.

Note that long-term irritation is rare. In my case, with stage-4 cancer, it's good that the radiation wasn't overprecise, because that meant the radiation had a chance to attack cancer cells near the prostate as well as those in it. For most people who get urinary-tract irritation and incontinence, it starts a few weeks after radiation therapy and ends within a couple of months, and with proton therapy (which is highly-focused, and thus, wouldn't have been suitable for my stage of cancer), there's a good chance you won't experience it at all.

Interesting to hear you were using Myrbetriq. I started it about six months ago To help with incontinence and urges at night. I started taking one pill a day, but after about a month, I found that just wasn’t adequate and went to two pills. It took a month, maybe two for full dosage to really work, but I no longer get up more than once at night to pee and the incontinence is reduced by at least 80%, and it was never even 2 pads a day originally.

You have no incontinence problems at all after all of the things you’ve been through.

Just noticed the bill for 100 pills was $1300, $13 a pill is a little steep. I paid $0.