From what I have read one way to avoid castrate resistance is to go on a BAT Protocol.
The problem is the onco's at The Mayo Clinic will not prescribe it at this point..one told me of a patient whose PSA skyrocketed, the cancer became wildly metastatic and the guy has less that 3 months to live since neither ADT - Chemo - Immuno Therapy- Parp Inhibitors will control it.
I still would like to try BAT....I have DES...T...and can get 3 month Lupron shots...anyone now on a BAT protocol or know how to put one together using the above drugs. At this point I don't give a damn...tired of the side effects of Xtandi...worse that can happen is I go to hell and meet Hitler - Jack The Ripper - Jeffrey Dahmer - and The BTK serial Killer.
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Dr. Myers was a follower of "Dr. Bob" in the early days & was quite happy to use T, it seems. But he mentioned 2 patients who scared the hell out of him. The context was two other men who were in remission but had no real T recovery, were utterly miserable & begged to have T restored. He was as nervous as they were as the PSA rose while T climbed into the normal range - but PSA leveled out as T rose further. The guys remained in remission. (This is all from memory.)
I remember thinking about the scary patients, & that normal T is cleared quite quickly. It follows a 24 hour cycle is highest around 7 am.
"Castration time of bilateral orchiectomy ranges from three to twelve hours (mean, 8.6 hours). The biological half-life of serum testosterone was from thirty to sixty minutes (mean, 45 minutes)." [1]
& yet, as T fell & ADT resumed, Dr. Myers patients continued to see PSA increases. I don't understand it.
One bad experience at the Mayo & everyone has to suffer. LOL
Sartor told me the same, he said to stay the course with ADT/xtandi and mitigate the SE’s however you can, estradiol, ibuprofen, exercise, etc. I am taking a lower dose however, now on 2 per day after hitting a point where 4 per day seemed to be reaching a “toxic” level. Dr. Myers concurred just prior to his retirement. I’ve been taking xtandi for about three and a half years now.
My Onc. was OK with lower dosage of Xtandi...I had to tell him I had lowered dose acct. excess toxicity and would never take 160 mg again, went to 120 mg and improved in 3 days. Gradual decrease to 90 mgs and did ok. Went back to 100 for 2 weeks, and had to go back to 90. Still working to hold PSA in check and I know other here who have had to cut to 80 mg. To toxic for some of us.
Sorry for the long wait for answer. Was in North IDAHO with no coverage. Side effects. Complete invalid. No balance, no felling in feet, couldn't even control or move toes. Hands all but worthless, couldn't pick up glass of water, cut food or wash myself. Face hands, butt all completely without feeling. (couldn't wipe my ass). Vision poor. Bloody discharge from nose 24/7. Take a drink and some would just run out side of mouth and down chin. Kind of completely took my QOL away. Life not worth living.
YES, still have trouble with hands and feet, but with new glasses and computer miss spelled word alert, I am getting by. Still weak, but PT is helping with that.
Find another onc. It might take a while. Mine saw that I was going to quit treatment if all I could do was ADT, so we did BAT for a while. She's caring and compassionate, a rare quality in that field.
The early clinical trials were limited to men in the end stages of their disease so that reduced concerns about making things worse. They aimed for serum T levels above 1500 ng/dL. For most men 400 mg of testosterone cypionate injected IM will do that. One injection a month; the T shoots up but starts falling almost immediately with a 5-8 day half life. By the end of the month T levels are back nearly to castrate levels.
I searched the medical literature. There are only theoretical, pilot, and Phase II studies, none of which can be considered proof of safety or effectiveness. You may consider asking your oncologist to help you find an investigational protocol to enroll in with BAT to see if you qualify as a subject. Good luck.
I asked my Duke MO that very question when I had my recent (second) 6-minth Lupron the other day: "what is the best way to prevent castrate resistance?"
He said to keep the PSA as low as possible, and as I am now undetectable that seemed good to me.
Is that the whole truth, or is the answer unknown?
There is some truth to the claim that lowering PSA as much as possible will slow the development of castrate resistant cancer, but it is a complex chain of reasoning. We do know that in castration resistant cancer cells there are mechanisms to produce androgens within the tumor itself.
There is growing acceptance of a model for progression of castration resistant disease that goes something like this: The initial reduction of testosterone to castrate levels does indeed kill many tumor cells. But never all of them, that is a problem in chemotherapy as well.
Most solid tumors are limited by access to oxygen, glucose, and other necessary nutrients. Nearly all solid tumors employ various means to induce the growth of new arteries to increase the supply. Many promising anti-cancer drugs seek to prevent this abnormal growth of new arteries.
When the quick drop in testosterone kills a large fraction of the tumor, those cells that remain are no longer limited by competition with the other, now dead cells. It's similar to weeding a garden; just after weeding you have a lovely clean patch of earth, but that same condition is perfect for the growth of new weeds or rapid growth of small weeds already in place. If you can't come back to pull the new weeds, the garden is quickly overgrown again.
So those prostate cancer cells that can survive with castrate levels of testosterone begin to multiply and grow, without the former constraint of competing with androgen-dependent cells. In a year or three they have grown to the point where PSA starts an inexorable rise and the tumor grows and often spreads. This model explains why many men on ADT progress to castration resistant disease.
This is one possible explanation for gusgold's statement that "one way to avoid castrate resistance is to go on a BAT Protocol. " In BAT the level of testosterone cycles rapidly from superphysiological levels (1.5 to 4 or more times normal levels) back to near castrate levels. There is some but by no means complete evidence that the cells that can live with very low androgen levels are poisoned when they try to divide in the presence of high levels of testosterone. There is also evidence that this works only in some men and not in all men. The concern is that if the cycling doesn't work, high androgen levels might drive the growth of androgen-dependent tumor cells. It's possible that BAT may help control cancer in some men while making the cancer worse in other men. We really don't know at this time.
All in all, I would say that your doctor's response is not the whole truth, and that there are still many unknowns.
I'm not gusgold, no offense taken, just don't want to put words in his mouth.
It sounds like you've come close to the limit of what your doc knows or is willing to discuss. There are no definitive answers at this time, and that's true for many aspects of managing this disease.
There are multiple trials of BAT underway. Finding a doctor who is participating in that work is more likely to produce well informed answers about the current state of knowledge. Even if you don't qualify for a trial, talking to a doc who is involved with BAT research has a much higher chance of answering your questions on this topic.
I made a pretty deep dive into this in October 2018. At that time, the short answer to your question was "I don't know." I don't recall any trials or any discussion of BAT for those variants of PCa.
Things change very rapidly. There may be more information available today.
Hi Nalakrats:
I appreciate all your insight.
I am the guy with the psa around 1.5 or less for over 4 years and I just take 50mg of Cassodex daily. You told me about the Vanda implant. No on here in the Phoenix area - Mayo Clinic - Honor Health - has ever heard of it. Do you know MO's that use it?
I thought it was the BLT serial killer. Got me an echo dot on cyber monday and since i live alone am have a great time. "Alexa lamp on, Alexa lamp off, Alexa lamp on, Alexa lamp off. Alexa what time is it. And on and on. Not as good as having the wife here again, but am talking to myself less.
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