My PCa is progressing, applying for clinical trial

So much has happened I don't know where to being.

I was on and off the Casodex for a few months and my PSA went up, then down, then up again. Now it's over 6 and the doctors are convinced that the effectiveness of the Casodex has stopped. They believe the cancer has mutated around the Casodex. Something about the size of the molecule binding to the AR being large and easily knocked out of the way. XTandi is a much smaller molecule and binds tighter and is much more effective. I have a bottle of Xtandi on my kitchen table still sealed. But I may not be taking it...not yet.

Because I have a BRCA2 gene mutation, I'm eligible for a clinical trial with PARP Inhibitors. You can google them and see what they are and how they work. It looks like they are targeted therapy against the cancer cells and leave health cells alone. In short, they exploit the fact that the cancer cells have the BRCA mutation and can effectively cause cell death.

I was a little skeptical about being on a clinical trial this early in the game, but the onco who suggested this works at Penn Medicine where there is a brand spanking new BRCA2 clinic, one of the first of its kind. And she seemed to have some inside dope she wanted to share but remained restrained.

"This could work for years and years, keeping your cancer stable" she said. Apparently, this is true even though my PCA is all over my body.

I went home saying my mantra over and over: "Years and years! Years and years!" This could mean I may not even have to consider Xtandi, Zytiga or chemo for years. Or maybe not!

So on Tuesday I have an appointment to see the people at the clinical trial. I believe there is a requirement that I not take Xtandi and stay on the Lupron, so I just discontinued the triple dose of casodex.

I'm very upbeat about this. I know this isn't entirely relatively to most people who don't have the BRCA mutation, but its good news for those who do, that I can be a pioneer in this therapy which is only about 3-4 years old and won't get FDA approval for many years.

It goes without saying that I'll keep you folks updated.

John,
You are still our poster boy! Now, if you could learn to play a guitar, you could join Todd on stage--I'm happy for you going for the gusto!! I sure hope you qualify--Keep us informed young man--buy the wife a good bottle of model wine tonight--Dam, I forgot you are on lupron so maybe don't?
Bill

Sounds very interesting. Here's to it working for lots-o-years.

All the best,
Andrew

Years and years sounds wonderful! This will be an interesting journey to follow for sure!

Did you have some type of molecular pathology to find the BRCA2 gene or family genetics or what? Sounds good in theory here, hope that it works for you and would be great for others to know such. If it doesn't work then you can go back to other concepts. Best to you on this.

Sounds promising. Good luck with the trial.

Your cancer is aggressive but fortunately so are you! You've been really proactive about researching this, understanding your case and now that's paying off in this eligibility for this cutting edge trial. I think it's a great sign your onc was enthused (despite obvious effort to not "remain restrained") -- I think oncologists are pretty darn cautious about not over-promising.

Best of luck...looking forward to reading your good news in the future

That's very promising news, JohnKeats.

I have the same question as Zufus.

I had the interview for the clinical trial today and found out a few things that were new to me.

1) It's a randomized trial, meaning that I may not wind up with the PARP-inhibitor.
2) It is in combination with Zytiga, so if I am in the group that doesn't get the PARP, I'll still get the Zytiga.
3) I'll know which group I'm in at the time I start the medication. I can opt out at any time.
4) It's phase 1, and will only be running for a few months. But if I do wind up with the PARP and if I'm benefiting from it, the FDA can be petitioned to manufacture more, but there's no guarantee.

Anyway, it's not as straight forward as I would have preferred, but that's the rules of this particular clinical trial.

Most of the clinical trials with this agent is for women with breast cancer. Not much is being done with prostate so it's not as well understood yet. It looks promising however. The PARP Inhibitor is formally called ABT-888 or Veliparib.

I'm going back in 2 weeks to sign the papers and get some initial testing done. The doctor and the clinical trial nurse were very friendly and very generous with their time and with answers to a million questions.



So it looks like I had a false start with Xtandi, tried to get the PARPS, and may now wind up with only Zytgia. But I may also wind up on a double agent clinical trial with PARP/Zytgia.

More later...

Thanks Casper. However, they did tell me the Zytiga would be my financial responsibility (don't know what insurance will say but they approve XTandi a few months ago). Only the PARP will be free, if I get it.

John,
Huum!! Don't understand why you will have to pay for the xytiga.. I'd talk to your Uro again and see what she can do??
Bill