Is there an end to this train ride? and how will they know?

@northoftheborder Thank you

It'ts 2:00 in the morning

couldn't sleep feeling jumpy

OH, just like during the day when i get the hot flashes

I bet it's this Zytiga

@lacraig1 Zytiga's an older drug that's out of patent (hence, cheap for insurers) but requires you to take the steroid Prednisone with it.

That steroid might not be doing you any good. Some people handle them fine, but when I was on a steroid in hospital (to try to bring down my spinal inflamation), it was a good night when I slept more than 30 minutes straight, and I ended up needing insulin shots for steroid-induced diabetes (both cleared up after I stopped the steroid).

You might want to ask your medical team about moving to one of the next generation of ARSIs, the so-called "-lutamides" (Darolutamide, Apalutamide, or Enzalutamide, aka Nubeqa, Erleada, or Xtandi).

The -lutamides don't require a steroid, and have proven amazingly effective in trial after trial, but they cost a lot in the U.S., so insurers might try to steer you to back to Zytiga+Prednisone as a cheaper, "good enough" option. 🫤

Best of luck!

We will all be on this train ride for (nearly) the rest of our lives.

I started having PSA tests in 2000; I was diagnosed with PCa in 2012; I had PCa treatments in 2021.

I’ve had 48 PSA tests (as of my most recent one 6 months ago); I’m due for another PSA test next week.

I’ve made the decision that I’ll continue getting PSA tests for as long as I’m getting any other bloodwork done…….

We will all be on this train ride for (nearly) the rest of our lives.

I started having PSA tests in 2000; I was diagnosed with PCa in 2012; I had PCa treatments in 2021.

I’ve had 48 PSA tests (as of my most recent one 6 months ago); I’m due for another PSA test next week.

I’ve made the decision that I’ll continue getting PSA tests for as long as I’m getting any other bloodwork done…….

@lacraig1 I don't want to minimise what you're going through, but it won't always be as hard as it is now, so don't give up hope.

There was a popular WW2 song about the hardships of war called "You'll get used to it." It's really true. I don't love the ADT and Apalutamide side effects (or quarterly PSA testing, or the radiation damage to my bladder, or the rods and cement in my spine, or… or…) but after 4 years, it's become my new normal, and I don't think about it too much. I guess I got used to it.

@brianjarvis thank you

I haven't counted them. I don' t think I will. it's been at least one a month since April.

@northoftheborder
My Zytiga costs $1500 a month. There is a program that pays for it.

@lacraig1 Yes, and since it's out of patent, you can get generic Abieraterone (same thing) down there in the States for much less than that: about US $20–40/month from CostPlus, + under $10/month for the Prednisone. So even someone without insurance can afford it.

By comparison, Apalutamide costs US $16,000/month down there. It doesn't require you to take a steroid, and it has show astounding results in big trials like TITAN (and in my personal experience: it has literally given me my life back), but your insurers will steer you away from it because of the $$$.

However, if it turns out to be the steroid that's making your life miserable, you might be able to make a case for one of the -lutamides.

(For me, the Ontario government pays "only" CA $3,374/month — about US $2,450 — for my Apalutamide, because drugs cost less outside the U.S.).

Best of luck!