I am about to begin BAT with a new MO (who works in MA and NH), and am looking for some input from forum members. My MO has an existing contact at Johns Hopkins that he's consulted, but is not (yet) in direct contact with anyone from Denmeade's group so far as I know.
A little background...
In spring 2022, had a PSA rise while on ADT + abi + pred, after about 8 months of lower PSA and ALP. (I have extensive "superscan" skeletal bone mets, ALP was over 1000.) Began Pluvicto trial with Dana Farber, and after an initial PSA drop it rose through the summer/fall of 2022. Scans showed what was termed "stable disease" but some new mets appeared.
After my fifth infusion (late Oct), I had extreme fatigue and my mild anemia accelerated to "moderate" levels and I quit the trial before my final infusion. I believe I also had some kind of post-COVID malaise/virus and felt increasingly weak, depressed and unwell through Nov and Dec. That, along with non-cancer back pain, led me to quit my job and go on my wife's insurance.
Being ill, I missed my 3-mo Lupron shot that was due in late Nov. With the insurance switch happening Jan 1, I decided to move my care closer to home and resume with a new MO. (Dana Farber will not do BAT except in clinical trial.) We decided at our first appt. on 1/6 that since I still had some abi on hand, I could resume that along with a short course of high-dose dex to get T back down asap, and schedule a Lupron shot. In addition, my anemia had rapidly gone "moderate" to "severe" and a transfusion was needed.
First question: having received my Eligard shot yesterday (Jan 19), and discontinued abi, what would be a reasonable date to get my first dose of high-T? My MO thinks it should be a full four weeks from 1/19, but wouldn't a full month from 1/6 make sense, too?
Technically I was "off" of ADT for about six weeks, but after having a T <4 for over a year I can't imagine my T recovered too much during the month of Dec. Then the abi should have reduced my T, even though abi monotherapy is not considered "ADT." Am I "castrate-enough" to start the high-T by the date of 2/3, if not sooner?
Second question regards the current nature of my PC. Between the cancer and the Lu177, my bone marrow is not producing sufficient red blood cells or platelets. I expect to need another transfusion in a week or two. Is there anything in the literature, or anecdotal, about successes or failures of BAT when bone marrow is involved? Intuitively it seems like a good therapy in this situation since the high-T itself may stimulate some of the needed anti-anemia activity. But if the T works to kill cancer cells as it hopefully will, is there any evidence in BAT-treated men of recovering marrow function after it being compromised by cancer and/or radiation? Or any evidence or reason to think BAT might worsen the anemia (other than if the T stimulates progression instead of slowing it)?
Any input is appreciated, even if just thoughts. I am pretty excited to give this a try, because if it fails to slow progression I hope to at least get a short QoL boost.
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noahware
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No advice, but wanted to offer words of encouragement. My guy was in about the same position as you are and was ready to try BAT. We didn’t make it that far. Hoping you get some real success and if nothing else a nice QOL boost as you mentioned. Keep kicking ass!
Thanks so much, Russ. I am not too worried about a little spike in pain from the inflammation. My lower back pain has been attributed to non-cancer cause, although the mets cannot be helping.
I will certainly be staying in touch with you, because my MO seems open to potentially tweaking things if they make sense, like adding enza. Perhaps also extend the high-T beyond 4 weeks, if it seems to be working?
This is great news and I'm happy for you. I hope things sort out and your blood and marrow issues resolve quickly. Sorry to hear the turmoil that you've experienced with the ADT drugs, the LU-177 trial infusions and the search for an MO who will work outside the SOC guidelines. I'm still n the research BAT believing that I am presently stable but will never be in remission, so I must know what I'll need to do next when the PCa resurfaces. Hopefully, the HU BAT crew should be able to give you some guidance.
Definitely the right place to come for advice, starting with smurtaw.Even after you commence BAT I would not stop your search for second opinions. They can take a while to line up. And for the good ones you will have to travel.
I would definitely get one from Dr. Sartor at Tulane. He was involved in the original Denmeade trials. And he is likely to have thoughtful and original opinions.
I too have completed the LuPSMA trial at Dana Farber as you have. My response was also similar. Initial steep drop in PSA then a gradual increase. I reached out to Russ and had to learn all I could regarding BAT. Met with Denmeade at Johns Hopkins. We talked for an hour and a half, very positive. He said I was in the sweet spot for a response. I've initiated a BAT protocol with the intent of my MO supporting with Denmeade's instructions. Comments from Denmeade regarding BAT, bone density increase, muscle mass increase, yes possible increase in bone pain but he is not sure if this would be a reason not to try. Libido improvement along with QOL, more energy. I have initiated a BAT protocol using propionate with a background of Lupron. Shall be monitoring T and PSA as this progresses.
Good for you and thanks for sharing your meeting with Denmeade with the HU community. I find Denmeade’s and John Hopkin’s receptive openness and offering of help surprisingly optimistic. Hopkins is a COE SOC operation, so Denmeade’s receptive welcoming of patients directly or their doctors to counseling for BAT from him in their experimenting is surprising. Most of us have MOs who want to hide under their desks when we mention using anything outside the SOC for our PCa care. It is a search to find docs who seem to care about advancing progress in treating the disease more than they do about running contrary to their employer’s directives about what treatments they can offer their patients and what treatments they cannot even talk about for fear of lawsuits or peer pressure. You are are PCa warrior. Thanks for sharing your experience.
Thanks, Mark. Great to hear you went to The Man himself for a consult. I plan to reach out to someone from Johns Hopkins, too, but I don't want to step on my MO's toes since he already has a contact there. We will have to compare notes here on the forum as we both go forward with our post-Pluvicto BAT.
There must be something special in the air at Johns Hopkins. In addition to being the only place really interested in BAT, it was the only place that maintained use of a (highly effective) keto diet to treat epilepsy. Just a few decades after keto was proven as a therapy in the 1920s, all other hospitals, institutions and doctors switched to the newly discovered anti-seizsure drugs and abandoned the dietary approach. If Johns Hopkins hadn't kept going with keto through the following decades, the knowledge of its efficacy might have been lost forever.
Sort of the same with BAT: without Denmeade and Johns Hopkins pushing this along even without the profit motive from drug companies (that helps fund most RCTs), this therapy could have remained on the fringes forever.
Update: Started my third cycle of BAT. So far very good results. PSA has dropped over 50%. Currently PSA 1.51. QOL is much improved. I have stepped up my exercise routine with more vigor. Rowing in the morning and long hikes in the afternoon. The MO's at Dana Farber, Johns Hopkins, my Urologist , and local MO are all monitoring my activity with interest. Most Trial Studies seem to be using Cypionate where I am using the Propionate form of Testosterone.
Good to hear, Mark.. I am actually getting my first shot of cypionate tomorrow. I ran into some pretty severe problems that delayed my BAT plan, which I will get around to detailing in a new post soon.
Good summary up front from Smurtaw. Waiting a month seems completely unnecessary and indicates that they are nervous and uncertain about it. Tell them that you have studied it and are well aware of, and accept, risks including possible accelerated progression.
The first cycle will be telling. How you respond: Does PSA go up moderately and then comes down when the T drops low again. That is good. If it stays high even when T drops to near castrate, then no. That is how you will know whether or not to continue.
You can just try the single injection of 400mg T-cypionate for the first month (or 3) . Since that is the standard BAT regimen it will be easier for your MO to accept. If you respond well you can modify towards longer cycles as Russ, Patrick and myself are doing. The protocol of the Extreme-BAT trial (Ex-BAT) is in the right direction: It uses one month of high testosterone alternating with one month on darolutamide (but you could use enzalutamide as well). Personally, I use one month of Orgovyx for my “off” cycles without any other ADT. And darolutamide or enzalutamide will clearly give a sharper cutoff in blocking any residual testosterone.
But the important factor is to get started and see if it works and is beneficial for you. Then you can consider refinements later. Best of luck. Paul
Thank you so much for the great comment. My prior MO refused to give me Procit when I asked about it, citing the link to cancer progression observed about two decades ago. (I did not bother arguing that there were new studies suggesting this was merely an association and perhaps not causal.)
The likely benefits of high-T seem so obvious: better muscle, better bone, better red blood cell and platelet production. Even if the cancer itself progresses, I feel the improvements in those area might help me better survive (or, relatively, at least better "thrive" to whatever extent I can).
I'm probably not a good one to respond to specifics. I'm 74 and have lived a very good life, but I know something is going to kill me sooner or later. If it's not PC, it will be a stroke or Heart attack. While I am as active as I can be with my treatments, I try to not let that interfere with enjoying the time I have left.
As for my PSA and T:
01/17/20 – PSA 1.7 – T 27
11/04/22 – PSA 27.3 – T 19.5
12/01/22 – PSA 16.1 – T113.3
01/05/23 – PSA 9.1 – T 39.2
You can Probably see when I started BAT.
I don't notice much difference. I might be a little more alert, have a little more energy, and have a little more sex drive, but no drastic changes.
Yes, I started in late November, and I get one shot a month apart. As far as the dosage goes, I let the Oncologist take care of that, but I will ask him on my next visit.
Honestly, I do my best not to focus on my treatments too much lest I forget that I'm still alive and can be enjoying other things while I still can. That's just me though. I wouldn't dream of lecturing someone on the best way to address their PC.
Smurtaw, I appreciate your analysis of working with T, I believe it needs to be individualized, I cooked up a protocol with my Onc, and do a Ultra-Sensitive PSA and T once a week, really trying to figure out the T graph and guard against triggering a met, current goal is to be very high (1200) for about a week, then drop to normal (600) for about 1 week, throw 400mg (10 caps for 5 days) of Xtandi into the blender, and seek a T around 50, not exactly 0. I stopped making T years ago. Use T-Cyp 100mg on day 1 and 3 pumps of androgel for 7 days, then 2 for 7 days, then 0. Last month I got down to T 49, this month still was 165. Pay attention to published "half-lifes" of the drugs, it'll be different for every human. This can't be clinical trialed, as you say.
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