(... that's you, Russ!)
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.
If PSA is undetectable for over 2 years?
No longer undetectable
What Are Reasons Not to Use Bipolar Androgen Therapy (BAT)?
Hi,
Thanks for asking the BAT-crew.
Anemia should become a non-issue if you did BAT. I was anemic going into SPT and very quickly went normal. My blood measurements have stayed about the same on BAT.
1. Have you measured your testosterone? After Lupron discontinuation, it takes months to years to recover. So it is very possible that your T is still zero. My MO advised me to skip my last Lupron shot and just measure my testosterone to determine if and when I need a shot. If your T measurement is <20 ng/dl then waiting is not required. – ah, reading further through your comments, I see that you know this. Good. Just get a measurement. Ultalabs.com is what I use.
To continue that line of thought, even if your T is not low, I do not see a reason to wait. You’re going to do high T for 2-3 weeks so you absolutely do not need to be in an ADT state during this. After the 2-3 weeks, yes but you could also use Zytiga if needed. Or better yet a second gen ARB/ARSI like Xtandi. Those will block any testosterone and it’s signaling so cool stuff. Winner winner chicken dinner.
2. I haven’t encountered any research about BAT and bone marrow health. In my case my bone density went up and my RBCs etc. normalized. I wouldn’t think T would be problematic. You might want to see if you can contact Denmeade or some other knowledgeable BAT doc to ask.
Given that you have bone mets you might get some pain when you first inject T. According to Denmeade this is NOT due to cancer growth. It is from inflammatory factors.
My thought is that you could inject a low dose of T (or even better, get some Androgel or Cernos gel) to see what kind of pain you get. If none, increase the dose of T. Ramp up until you get a high level of T. This would be your start of BAT.
Since you have been doing ADT you have already done the lead-in ADT phase. So no need to wait unless your blood test T indicates.
I will PM you later today. I’d love to help and there are some lower-risk ways to start off BAT. They don’t do all of them in trials because it would simply make it hard for compliance and tracking. And implementation would be a mess.
Russ
As always, A shining ray of light from Russ.
Ed
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?
Best,
Noah
Excellent. I'm glad your MO is willing to mix things up a little.
I think we should do short cycles and also long. Mix it up. We do not know the optimum time frame. Morgentaler and Schweizer picked 3 months. Denmeade picked a month. I've also seen two months.
I go 1 week to 4 months.
STEP-UP trial should be great info for you. RESTORE and TRANSFORMER are complete and show some possibilities for Xtandi use for CRPC men.
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.
Sent you an IM.
Are you going to use cypionate or propionate?
T-cyp, don't know about propionate.
Ok. T-cypionate will work with Xtandi. And it is easier to get and easier to get an MO on board.
T-propionate is a great one for BAT. Much shorter half-life. Clears very rapidly. You can use Xtandi, but you do not need to. Your T will go castrate in 7-10 days. Within 2 weeks it should be extremely low. Empower pharmacy in Texas compounds it. I get mine through other means.
I put a fudge factor into the formulas for serum T level. Thanks for the suggestion - I'll point out that the half-life variable will need to be characterized for each individual.
I have these variables calculated for me... My calculations are typically within a few percent of my lab readings (during the high T phase).