Has anyone had High Testosterone Therapy? Or BAT? My husband has been through all available therapies available to us in the US and Lutetium177/Actinium225 (4) cycles in Germany. It seems the German therapy is not working any longer- his PSA is climbing (383) and his local oncologist has him now on Xtandi. Chemo was tried unsuccessfully. We are researching what else might be there.
Thanks to everyone!
BAT trials have all been restricted to men whose metastases have been asymptomatic or minimally symptomatic. Has he ever had a met biopsied for a full analysis- histology, IHC and genomics?
Thanks for that info, and it applies to my situation with no symptoms and PSA jumping from 2.6 to 3.6 in a month after the 6 Taxotere chemo rechallenge ending in April 2021. Abiraterone and Xtandi failed in 2020.
Axumin scan the week after showed that the two 1 cm iliac lymph nodes with high activity resolved, but PSA still rising :-).Have a Kaiser MO appt and then a Lupron shot after that. I msg'd MO about 1/2 dozen BAT papers esp those by Samual Denmeade at Johns Hopkins
Fight on
Randy
I don't think BAT should be attempted outside of a clinical trial. It might make things worse, and it has to be closely monitored. Besides, evidence so far is that it does not extend survival. Jevtana + Provenge might be a better choice. Or one of the radiopharmaceutical trials.
He has had Provenge and one cycle of Jevtana before we went to Germany last Nov for first infusion of Lutetium 177. He had tandem Lu177 and Ac225 for 3 cycles after that. PSA climbed after last infusion in Germany which was Last June. He is currently on Xtandi but do not know yet if it is effective.
Sorry - it's confusing because dockam kidnapped your thread, That last reply was meant for him. The first reply was meant for you.
Sorry that I hijacked this thread. Okay, thanks for the input about Jevtana.Probably not eligible for a clinical trial, as I've had way out of protocol number of chemos (15 in 2015 and then 6 more in 2021)
My husband has had 8 cycles of BAT therapy and it has been great. He is one of the 30% that responded to treatment with his PSA falling from 30 to 6. PSA went up slightly last month, but he still got the T injection so we are guessing his BAT days may be coming to an end. We will know more tomorrow when he has tests and scans. Once BAT ends, he will start Xtandi again after a short break.The last 8 months have been incredible. His energy, outlook on life, smell, taste, and strength all improved dramatically. We joke he is like Lazarus and I feel like I got my old husband back. Even if there is no survival benefit, the QOL benefit is huge. The last 8 months have been a blessing.
My husband has a few mutations, one of which is TP-53 which is shown to respond well to BAT. It is a fairly common mutation with prostate cancer.
Many docs won't do BAT because of the fear mongering and lack of trial info, but if you can get it and have minimal pain, we would recommend trying it. My husband's psa spiked the first month before coming down, so docs want to have 3 months of T injections before deciding to continue. A psa rise the first month is not reason to panic.
Forgot to mention getting off the Xtandi for 8 months has helped energy, brain fog, taste, etc too. Xtandi has some serious side effects you don't realize until you come off of it.
I was on a BAT trial for roughly the first half of this year. I think it was combined with Keytruda or something (I do have a germline CK2 mutation.) I'll be blunt here: I don't give a sh*t if it 'extended my survival' or shortened it, because I felt so good for the 6 months it lasted! ... Like I haven't felt in 6+ years of ADT. I got a lot of relief. However, I also did have some pretty difficult mood swings that followed the ebb and flow of the testosterone injections every month, so there was definitely a trade-off there for me, but it was still a welcome change to the grind I had been on. I've been struggling with symptoms of depression for about a year now before and after the trial, blended in with all of my other mounting long term ADT symptoms.
FYI- Somewhere along the way I have come to recognize that for me, everything I've done in treatment has already been my "more time". I try to live beyond hope and fear, and realized along the way that I could not keep pursuing a phantom of "more time" as if I were saving it for some future that never truly arrives. I think this attitude helped me feel okay going with this counterintuitive treatment approach; because it did feel a little scary knowing that some people see their PSA jump higher. Some other people do very well - better than I. Maybe eventually they'll be better able to predict who is more likely to have a positive response...
My PSA reactions confounded my doctor a bit because it jumped a bit (maybe from the 20s to the 30s) and then just hovered there. (I've been tested for neuroendocrine variants a couple times because my PSA acts a little weird and doesn't track with my scans like the docs expect.) But at the three month scan for the trial my metastases were stable, and at the 6 month scan I showed radiographic progression so it was time to come off the trial. What kept me confident and allowed me to enjoy the ride was that I was able to ride my bike pain free almost up until the 6 month mark, and before the trial I was starting to get pain from a metastasis that I have right on my sit bone being aggravated by the bike seat. (I had to stop riding to get in the trial because any cancer related pain was disqualifying. Once I was in the trial I broke all my cycling PRs since beginning ADT years ago - it was so satisfying!!!)
... For what it's worth: clearly no two journeys are exactly alike. Statistics are valuable and informative, but it seems to me that they don't exactly translate to my individual experience, so I'm willing to be a bit experimental. I also highly prioritize quality over quantity. No offense to delicate ears or alternative philosophies and experiences, but I have come to a personal truth that I can only crassly express in this post as a sense of peace in the knowledge that I was already dead by virtue of being born. The greatest difficulty that comes to me from this are people who love me and can't see it the same, and simply aren't able to let go - but we're working on it. Also, I have no children of my own, and imagine that especially young ones could have changed my calculus. I'm 52 now. Been doing this cancer thing for almost ten years! But I know I'll die when I'm old, because dying is as old as anyone gets (with appreciation and acknowledgement due to Joseph Heller's Catch-22 for some inspiration here 😊.) My expectations were only in the way of integrating this truth - painful as it may be for both myself and those I leave behind.
So anyway... my apologies for the injection of beliefs among facts, but for me they are entwined and it feels important to share. Please make use of whatever might help you and just let go of the rest (✿ ♡‿♡). Best wishes for both of your tandem journeys through this very challenging and painful time ❤️
One more thought... I talked with my doc about this. He's a very active and tapped in to a lot of ongoing research and he was running this trial (he also suggested that he was very skeptical about BAT and had to overcome some of his own prejudices to get to the point where he felt good about it, but the results he was seeing were very promising for some patients who were going strong.) Based on our conversations, it seems intuitive to me (and speculative, but also perhaps an emerging question in medical research) that it may be promising to try alternating ADT with testosterone, and perhaps longer intervals...? I was on Lupron the whole time. It felt like I transformed from a 25 y/o in the first half of the month into a menopausal woman in the second half when my testosterone level dropped way back down... a wild ride. But I think there's some real promise there for some people. They're still just trying to figure out who I guess...
Tak-Druk, your reply is a refreshing read! If we learned anything from covid, it is that everyone has a mix of beliefs and facts and you are true to yours. I wish you well as you continue your journey!
The BAT trials of Denmeade and Schweizer et al involved very advanced mCR PC patients and still about 1/3 responded favorably. PSA increased only moderately on the testosterone periods and fell back lower on the off cycles. Those who had a large and progressive rise of PSA (unfavorable response) simply stopped and did not continue the trial. Scans did not progress so little to no harm done. The other end of the spectrum is to use intermittent high testosterone cycling in those with low PSA, fairly stable disease without symptoms. Low risk of significant harm if PSA should indicate an unfavorable response. That is my case: Convinced my MO to allow a personal trial ( not in a formal clinical trial) after multiple consultants OK’d it including Schweizer and Beer.
On slower cycling after the initial one month BAT cycle showed favorable response. PSA returned to low baseline, <0.20, when off T. Now I am doing 2 months on and then 2 months off of testosterone cypionate 400 mg every 2 weeks during the “on” months. Monitoring closely and ready to discontinue if / when it turns against me.
Schweizer did do one trial on castrate sensitive patients, but it was testing only safety, and concluded it was safe.
Hi - I did a high T clinical trial. My experience and outcome is in a series of posts under my profile. In summary I had a mixed response. Some mets healed but others expanded. My treatment was not BAT.
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