Greetings from new member ANB

Greetings all from a new member. I haven't quite picked up on all the abbreviations, but here's my deal.

Age 64. Diagnosed Stage 4 bone metastatic end of 2016. Femur, ribs, scapula. Started ADT beginning of February. PSA 240, now (July) 2.75.

Started Docetaxel beginning May. Had four treatments so far.

I'm in a Clinical Trial at NIH where I will receive Prostvac after the Docetaxel treatment is done.

I've done a enormous amount of reading. I see this decade has been explosive in this field (Provenge, Abiraterone, Enzalutamide, Ipilimumab, Nivolumab, Xofigo). One major problem I gather is that they haven't had time to figure out who gets what drug in what sequence and at what stage of the disease. Many of you have probably already seen the blockbuster announcement June 3 at the Annual Urological Conference that Abiraterone showed significant efficacy when given along with ADT during the castrate sensitive period ("mCSPC"). https://www.urotoday.com/conference-highlights/asco-2017/asco-2017-press-releases/96169-asco-abiraterone-slows-advanced-prostate-cancer-helps-patients-live-longer.html

I want to take an active role in my treatment. One big problem I have is that all these new drugs were approved based on studies involving castrate resistant (mCRPC) men. Therefore, aside from reimbursement issues, which are significant, it is not standard medical practice to prescribe any of these drugs while still castrate sensitive. It's highly likely that some of these drugs would be better if used earlier. That's what happened with Docetaxel eleven years after it was introduced and it's what just happened with Abiraterone. It's also possible that using these drugs sooner in the disease phase may cause them to poop out and you'd have been better off waiting. At this point it's guesswork, though the trend seems to be to use them sooner and as part of a multi-modal strategy.

The problem is that Dr's don't deal in guesswork. My view is that I don't want to wait around for the inevitable castrate resistant phase to get any of these drugs. I understand the medical community doesn't know the right answer, but I'd rather take a chance with an oncologist's best guess than do nothing. It's been hard to bring Dr's around to this view, but I'm making progress. I say -- give me your best guess, tell me all the things you don't know and all the risks you can think of. At that point, in my view, it ought to be my decision. Isn't that what informed consent is all about? And these drugs are currently being given to mCSPC patients in Clinical Trials. If those participants can give informed consent why do I need to be in a Clinical Trail to get the same drug? The Dr's agreed in principle, though extracting information from them is not easy. I have a little time, since I can't have any additional treatment while I'm in the NIH Clinical Trial, which will end early January. So I'm working hard to come up with a plan.


I have a number of preliminary thoughts on how I might proceed. I'll give more details in due course, though I am very interested in the real world side effects of Abiraterone and Xofigo in particular. And VERY interested if anyone has any experience with the Mayo Clinic Individualized Medicine Center.

anb

The other reason doctors like to wait is that they want to keep "more bullets in the chamber". That is, they want to have more therapies to offer over time.

As my oncologist said to me the first time I met him. We will do Therapies A, then B, then C, then D, then E, and hopefully by that time they will have a F, G, and H available if any or all of the above don't work the way we'd like.

As they is no cure for advanced recurrent prostate cancer, that makes a lot of sense to me. Especially when you have a fast doubling cancer strain, as is my case.

Thus, I wouldn't take abiraterone any sooner than at a point where you know it works. Keep your "bullets" in reserve so as to always have ammunition ready to fight your cancerous enemy.

Welcome, and good luck ahead.