I'm now castrate resistant - what now?

[CrocodileShoes]

Hi everyone,

After 3 years of keeping the beast in its box, it seems to have escaped. I've been on Prostap (I believe it UK Lupron equivalent) and 50mg Bicalutamide and my nadir (around 0.7 has now doubled over the past 6 months. My current reading is 3.1 (12 wks ago, it was 1.5) So the trend is clear, and I see my onco this afternoon. He previously suggested keeping the injections, but switching to Apalutamide. I wonder though if this is just changing the label of this particualr can that we're kicking down the road? Is it likely to have a significant effect.

I am also in need of a CT scan (though our health service is overwhelmed with cancer diagnostics, following Covid). The last scan (pre-Covid) showed no mets, just the same seminal vesicle involvement I've had for a while. I was initial diagnosed as 3.7 Gleason 3+4. So, in a sense I'm back where I started, albeit 13 yrs of extra quality of life!

I'm tempted to ask him to recommend someone who is doing cutting-edge research as I have deliberately given myself a break from keeping up with developments. It seems unlikely that in the past decade there will not have been some treatment developments. A while back I considered going to Germany for more radiation, as, theoretically I was considered to be 'treatable'.

Am I past that stage now? Should I be looking at systemic options? What other cans are available for kicking?

Your help as ever is greatly appreciated!

[Magnus1964]

It is not "changing the label". You could switch to zytiga, xtandi or Apalutamide. Each uses a different approach to preventing testosterone from reaching cancer cells.

[CrocodileShoes in reply to Magnus1964]

Thank you. But isn't a rise in testosterone inevitable, as it was with Bicalutamide?

[Magnus1964 in reply to CrocodileShoes]

Failing one ADT drug doesn't mean you Will fail others. I was on casodex for 5 years. Then moved to zytiga, then xtandi. Each was effective for years.

[joeguy in reply to Magnus1964]

Sounds like you have been lucky. It seems that for most guys, once you fail one of the new, next gen drugs like zytiga or xtandi, they all seem to start failing. I failed on casodex (not uncommon as its an older less effective drug), but the new drugs like Nubeqa or Xtandi still seem to work

[CrocodileShoes in reply to joeguy]

Well, since Nuqeba is his preferred choice, that's reassuring. I still feel like this is the time to hit it harder, but I need to base decisions on evidence not desire.

[joeguy in reply to CrocodileShoes]

For me the Nubeqa has had a lot fewer side effects. Xtandi worked well, but was really messing with my heart and cognitive function.

[Tall_Allen]

A PSMA PET scan will tell you if it is still salvageable with radiation. Get it within a month of starting apalutamide.

[leebeth]

Discontinuing bicalutamide alone has a good chance of reversing your course and decreasing your PSA. Someone far more knowledgeable than myself can explain why this works, but in the most simplistic terms, over time the bicalutamide can act as a fertilizer for cancer cells throughout your body. Whether or not you should add another androgen blocker or first see the effects of stopping the Casodex is something to be discussed with your MO. The brilliant men in this group can address this as well.

[MateoBeach]

I agree with leebeth, CrocShoes. Bicalutamide is well known at some point, to stop blocking androgen receptors, and paradoxically start feeding (activating) them them instead. So first step is to stop bicalutamide and see if PSA drops back down. Should be able to know in just a few weeks. You can't go back on it if that is the case. But you can add any of the other AAR drugs , which do provide additional survival benefit. I favor abiratirone plus low dose prednisone first. But enzalutamide, apalutamide and darolutamide are all fine alternatives also. You have many arrows left, many choices for down the road.

[CrocodileShoes in reply to MateoBeach]

This is really fascinating and not what I expected. Are there any studies that back up the idea that stopping Bicalutamide might actually decrease PSA? And good luck with the path you've chosen. Because I worked (pre-Covid) a lot in Australia, I was one of the first to have a PSMA scan in Melbourne (I paid for it, but much cheaper than anywhere else) They were also trialling 177 and I was tempted to say 'Yeah, just chuck a bit of that in while you're at it!' Then it was only being used for Hail Mary options, so I'm very interested to see it being used much earlier in our 'journey' (God, I hate that term.....) Would really welcome you thoughts on stopping Bicalutamide and your hopes for your current treatment. Enjoy Perth (and especially King's Park) It's a beautiful place.

[MateoBeach]

Actually I spent the day walking Kings Park today and now having dinner at Oyster Bar at Elizabeth Quay. Yes I can dig up a paper on the bicalutamide reversal phenomenon. It is well known actually. Your MO should know about it if he prescribed it. I had it happen myself: nearly 5 years on bicalutamide 40 mg plus 1 mg dutasteride without any other ADT. Stopped it when my PSA finally rose and it promptly dropped down again. Had to go onto so else after that. But I had a good run with it. g’day

[Trivista]

Nubequa (Daralutamide) works for me. Non metastatic castrate resistant. Lupron couldn't keep up any more so we added Nubequa. PSA .02 .05 .07.1.0 1.07 1.77.... Add Nubequa and steady run down to .04 currently. Fatigue is a problem but I do love a good nap.

[CrocodileShoes]

Good to hear. How long have you been on Nubequa? And how long do you expect it to work for?

[slpdvmmd]

PSMA scan even if you have to travel. Determine if there is role for radioligand therapy (LU177, AC225 etc)

[j-o-h-n]

** DOCTOR ALERT ** DOCTOR ALERT **

Greetings doctor.... It is an honor to have you join us and thank you for your above post.

Please keep posting.

**************** Merci****************

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/14/2022 1:33 PM DST