After 22 years having undergone prostatectomy, EBRT, Lupron, Bicalutamide(5 years then failure) I am searching for the next step. Now 78, no metastasis(yet) PSA at 18. Wish to try BAT but need to find a doctor to monitor. the treatment. Live in TENNESSEE. Would like to do a virtual visit to discuss applicability.
Looking for BAT Oncologist. - Advanced Prostate...
Looking for BAT Oncologist.
BAT isn't used for non-metastatic castration-resistant PCa, and never has been. Nubeqa, Erleada, and Xtandi are the choices.
Yes, I am aware of that restriction. I am castrate resistant but I just don't see why metastasis is a restriction. The cancer doesn't change when it metastasizes it is still the same cancer. Why not go off-label? I would be willing to try. The new drugs are to expensive which leaves me no options.
abiraterone is not too expensive. You can get for around $150 a month from Mark Cuban pharmacy.
As T_A says, you will not find a "formal" BAT oncologist (meaning one who follows the protocols of the Johns Hopkins trials) because you are not metastatic. To the extent it can be considered a standard of care (even without FDA approval), BAT is suggested for men with mCRPC.
That does not mean you can't find a doc who might be willing to prescribe high-dose T for you. But finding that doc might be like finding a needle in a haystack.
You could try Compassionate Oncology Medical Group in LA. The founder, Dr. Liebowitz, is most certainly retired. He was a pioneer in outside-the-box use of high-dose T for men with PC. Whether the current doc there, oncologist Shahrooz Eshaghian, still makes use of that therapy is something you'd have to investigate. (Let us know if you do!)
If you aren't able to do the televisit you are hoping for.
Go do a face to face with Sartpr at Tulane. He is not intimidated by standards of care... though I don't think BAT has risen to that level of dignity yet.
He would be willing to supervise with the assistance of your local oncologist.
Start with a face to face visit with him.
It's not unlikely he will present you with additional options.
We tried to get a face to face w Sartor a few months back and they said they were not accepting patients for BAT. I had wished I held back the info that we were interested in BAT. My feeling is we could have scheduled a regular “second opinion” appointment and proceeded from there. We were immediately turned away when we came out the gate requesting BAT treatment. This was in October I believe, so things may have changed.
I’d have to add Dr. Sartor to the list of doctors doing BAT outside of trials, he was one of the lead researchers on the Transformer trial and has a number of patients using BAT. He is up there with Denmeade as far as experience with it.
But in regards to the initial post, I don’t think there’s any way he would prescribe it without becoming a regular patient and doing in person visits. And you have to meet a certain criteria in order for him to prescribe it as well.
Ed
I sort of assume that Denmeade and Antonarakis might not recommend BAT for non-metastatic men, but not sure if either has been explicit about that. I do know they are both quite explicit about saying, "BAT should not be used in the hormone-sensitive setting."
Because of SOC conformity and potential liability, these trials always work back from the more-sick, more-advanced patients to the less-sick, less-advanced patients, even if it seems logical that the less-advanced could greatly benefit from the therapy under investigation.
While there seem to be only a handful of docs and researchers who come right out and say it, a primary goal of PC treatment should be to try to PREVENT the progression to castrate-resistance. That was always a goal of iADT (even if an unstated goal) and should ultimately be a goal of BAT.
To elaborate, I am not looking for a physician to treat me but a physician with expertise in BAT to provide an opinion as to whether use of BAT in my case might produce favorable results. I currently live in Costa Rica and have ready access to Testosterone. Additionally, my wife is a physician and supportive of me exploring all my options, including protocols that are not FDA approved if there is a reasonable possibility of response. Liability would not be an issue as the physician would only be providing a medical opinion and not treatment or guiding treatment.
Despite providing me over 4 years of PSA control, my androgen blocker is no longer working and I have stoically endured the myriad of undesirable side effects that affect quality of life and cognitive and metabolic health. The prospect of some relief from these undesirable side effects BAT would be an added benefit for me.
I have been trying to contact Denmeade but have not found an email that he uses. Does anyone have contact information? I have contacted Johns Hopkins but they do not do virtual visits unless you reside in Maryland or Pennsylvania. Too expensive to travel to JH from Costa Rica for a face to face opinion. My wife, a physician, has put together a chronology of my treatments and the results. It should be adequate to provide an opinion. Not asking for treatment just a learned opinion.
You could try to reach Antonarakis at anton401@umn.edu and you might get through to Denmeade by trying one of the contacts for JH BAT trials (Rana Sullivan), at rtomali1@jh.edu or Tomalra@jhmi.edu
If I couldn't find a local doc to do BAT, I was actually thinking of going to Costa Rica and just winging it with some high-dose T. Like you, I prefer to go "by the book" with an established protocol, but I figure the worst that is likely to happen is PSA goes up and up and I go back on ADT (plus ?) and quit the T.
Personally, I agree with awb1 above: there's probably no reason, scientifically proven or theoretical, that would indicate BAT is not appropriate for you. But obviously that sounds better coming from a BAT doc than from a coupla guys on an internet forum!