How do you find a Onc that will perform BAT?

All of the bipolar androgen therapy (BAT) research has really created a strong desire in my husband to explore it further. We know he might be a risky case. But we at least want to talk to an oncologist who might be willing to try it and who has experience with it.

We have an appointment with our current Onc in 5 weeks. It's very possible he will not advise it because it's not something he's doing right now.

So that begs the question . . . how does one find onc's that are currently doing this. I know Dr. Leibowitz in LA is one. And I currently have an email into his office. And so outside of the trial docs, does anyone know of others or how we could find them?

This has opened the door to a hope for a better quality of life.

Liebowitz might. He hasn't been doing BAT, but he has been giving patients supraphysiologic doses of T for years with questionable results. He does make the patient sign a waiver acknowledging that the treatment will kill him and he promises not to sue.

You might try medical tourism. Doctors outside the US are less worried about lawsuits if it harms him. Maybe there are some quacks who would do it outside of a clinical trial - maybe try an internet search.

But your husband is on adjuvant HT after radiation, as far as I can tell, so none of this is applicable to his situation. The last thing you want to do during the clean-up period after radiation is interfere with the process by giving him testosterone. That would be kinda crazy.

Hey guys, we are just exploring this. In actuality my husband is probably on the cusp of recurrence right now. And two docs told us right from the beginning he only has five years. Well we're two years into it already so forgive me if feel like we need to explore everything we can.

This thing is enough to test even the most rational people. But there's a paradox here. We talk about all of these new studies and get excited and yet expect everyone to know just how they should be applied. Tall Allen your input here is invaluable. But you are a G6 and sometimes I wonder if you can relate to the emotional rollercoster that a G9 goes through.

peanut307-

I very much understand where you guys are at- I have had similar thoughts myself regarding BAT, mostly from viewpoint of improving QOL for someone on lifetime ADT (and with a very prominent "use by" date on the carton at that).

From one perspective, when you are told cure is no option and all care is palliative, then QOL becomes a central issue in trying to see a path going forward. So then, what does it matter if one wants to try off-label use of a very cheap drug that is showing promise under trial in certain conditions. Of course docs operate under the "first do no harm" clause- but chemotherapy and also ADT very often cause significant harm, so you are always balancing health cost vs effectiveness vs QOL- a very emotional and difficult equation- and hope is so important in getting on from day to day, we are always looking for nuggets of it in little corners on the web or in posts from others who share our fate. BAT sure offers a parcel of hope, and it seems so easy and cheap...

I am not advocating experimentation with BAT and a willing MO for others. That is not safe. But frankly, any palliative care is experimental (MO: "well, that treatment didn't work as I had hoped; sorry about the nasty SE though, let's try this if you are up for it..."). Even Zytiga does not work on some guys ("oooh, sorry about that nasty SE on your retirement account after 6 months on Zytiga. We need to move onto another therapy..."). The point I make here is that pretty much all CMS-approved PCa treatments are a numbers game (even ADT, but it has really good numbers for the transient effect it gives us). We just don't have any numbers for BAT at this time.

So I can see how it will never be a black and white issue (safe and proven vs not-yet-phase-III-trial-verified) for people with no hope of cure. And when we see some people clearly showing PSA stability and tumor regression in BAT trials, we wonder if it would work for each of us as well.

With regard to the numbers game for me, with data at hand, I am looking at median survival of six years, but I cannot fathom how a lot of Gleason 10 will impact that statistic, except I know it won't be in my favor. This disease will very likely kill me before I reach 70, and the last two years, the darkest of that stretch.. well I just don't think about that right now- plenty of time for that later, now is for the new sun each day and the joy that I can still work, think, and love.

But when I show castration resistance, I too will be wanting to have a conversation with my MO regarding BAT- regardless of the status of ongoing trials. If the setting is appropriate, than the risks I would take could approximate those I would encounter in a trial (an important point if previous therapies, or lack thereof, exclude me from a trial).

gosh that was not a "quick reply"- but keep at it you guys; sometimes the fight itself even gives us some hope

here's to fightin'
rf

Peanut,
BAT may very well be a treatment option in your husbands future but you are not there yet. Although BAT may prove to be a viable option after undergoing clinical trials, without those trials I would equate it to coffee enama's and vegan diets. We don't have the proof yet and until we do it could be very dangerous.

Having said that, I also hope it is a treatment that will yield dividends.

A challenge you to pull back your husbands collar and look for an expiration date stamped on his neck. You will not find one. My doctor told me a year was all I had to live. It has been 10 and 1/2