Calling all BAT-men ...: (... that's... - Advanced Prostate...

Advanced Prostate Cancer

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Calling all BAT-men ...

noahware profile image
35 Replies

(... 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.

35 Replies
smurtaw profile image
smurtaw

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

nuc1111 profile image
nuc1111 in reply to smurtaw

As always, A shining ray of light from Russ.

Ed

noahware profile image
noahware in reply to smurtaw

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

smurtaw profile image
smurtaw in reply to noahware

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.

awb1 profile image
awb1 in reply to smurtaw

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.

smurtaw profile image
smurtaw in reply to awb1

Sent you an IM.

smurtaw profile image
smurtaw in reply to awb1

Are you going to use cypionate or propionate?

awb1 profile image
awb1 in reply to smurtaw

T-cyp, don't know about propionate.

smurtaw profile image
smurtaw in reply to awb1

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.

smurtaw profile image
smurtaw in reply to awb1

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).

Zengal79 profile image
Zengal79

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!

ragnar2020 profile image
ragnar2020

Hi Noah,

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.

noahware profile image
noahware in reply to ragnar2020

Thanks, Jeff!

cesces profile image
cesces

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.

NickJoy profile image
NickJoy

This popped up on twitter today if it is of interest to you:

twitter.com/AarmstrongDuke/...

Ramp7 profile image
Ramp7

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.

ragnar2020 profile image
ragnar2020 in reply to Ramp7

Mark,

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.

smurtaw profile image
smurtaw in reply to ragnar2020

Times are changing. I truly hope that the QoL and demonstrated efficacy of BAT (for reasons I won't go into again) becomes more widely adopted. It is risky, but isn't cancer a risk (rhetorical)?

I'm very pleased that more and more MOs are coming out in support. Denmeade, Antonarakis, etc. My MO is all ears when it comes to my BAT program. She knows all of the details of my program and loves it (even the NPP and SARMs for joint health!).

noahware profile image
noahware in reply to Ramp7

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.

MateoBeach profile image
MateoBeach

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

noahware profile image
noahware in reply to MateoBeach

Thanks Paul!

Yingsang profile image
Yingsang

Not much I can add! Mateo Beach and Smurtaw--->finally got their names Paul and Russ are correct. The pain is not really inflammation in the bones. It is the dying of cancer cells.

What I could add is that the use of external T was found to increase significantly the Erythroid Colonies in the Bone Marrow. Plus the addition of ESF[Erythropoietic Stimulating Factor], which is a Glycoprotein Cytokine, which is in the body naturally secreted from the Kidneys, which stimulates Red Blood Cell production. There are drugs for causing extra stimulation. They are Epogen, Procrit, and Darbepoetin Alfa. So T plus one of these may correct low bone marrow.

The above research, some can be found in Science Direct.

Another area I could add with all the discussion about levels of T and the concern of whether one is Castrate, which is below 50 for T, and levels discussed by others of levels approaching zero, is the implementation of SHBG blood tests. If some one has a T level of 100, is that person above castrate levels? If this example has a SHBG level way over the upper range and has a Free T of 2 pg/ml. I suggest that with such a high level of SHBG that the blood test of 100 does not mean anything in relationship to castration. It is really the Free T that can cause signaling between cancer cells. The bound T is useless. As with very high SHBG levels the bound T cannot if I am correct interface with cancer cells for signaling.

And there is a method to keep your SHBG high, which is not indicated to do by the Medical community. And it is to use Liothyronin, which is a synthetic Thyroid T3. If your T3 is high, at the upper range or just slightly into the Hyperthyroid range, your SHBG will increase dramatically binding T, to great efficiency.

Now would this interfere with High Dose Injections of T-Cyp, T-Prop. or Androgel. I think not. But I have not had the opportunity to experiment on my husband, as he is a long way now from needing to do any form of BAT. As you men say, I have added something to chew on, and hopefully some help as to bone marrow. As Mr. Russ says, Bone Density will increase, with the addition of T. And he is correct.

smurtaw profile image
smurtaw in reply to Yingsang

You are correct.

Total testosterone > 2000 ng/dl is often used as a benchmark for supraphysiological levels, the portions of testosterone that are therapeutic are the free and bioavailable portions. Using the average SHBG for a 65-year-old man (approx. 50 nmol/l) and the average albumin for a 65-year-old man (4.7 g/dl) we can calculate free and bioavailable testosterone levels required for SPT. Free testosterone should be >40 ng/dl and bioavailable testosterone should be >1030 ng/dl.

Over time, high androgens will decrease SHBG. Mine has gone from 295 down to 19 nmol/l.

A handy online calculator: issam.ch/freetesto.htm

Yingsang profile image
Yingsang in reply to smurtaw

The standard range for SHBG is 17-72 nmol/L. My Husbands current SHBG as of last week was 155.11 nmol/L. That is more than double the upper range. I suggest when your SHBG is that high, that the amount of Free T, and the T loosely bound to Albumin, that the SHBG tends to win the gobbling up of the Total T. I would also suggest that when your SHBG was 295, that you probably had next to zero available T. At 295 you were 4 times over the Maximum in the typical blood range for SHBG. The binding and releasing of T from Albumin is an equilibrium equation. I do not have that handy, but I would venture to say as soon as T is released from Albumin in the equilibrium arena that it gets sucked up by very High SHBG. Meaning that Bio T and Free T goes down.

As an aside, what is interesting for men who are HS, and having very low PSA in the undetectable range, that the use of Liothyronin[T3], will increase SHBG severely, which will make very little T available to signal Pca cells, and unto itself can be an adjunctive form of ADT. Except one must be careful of going too high into Hyperthyroidism.

Playing with Hormones is an interesting science, that has best been left to Endocrinologists. Except for those that have a Hormonal Cancer, we have to sometimes take things into our own hands.

smurtaw profile image
smurtaw in reply to Yingsang

Yup. We need to watch for ourselves when it comes to hormones. It isn't very common for a medical oncologist to also know about hormones in detail just as it isn't common for an endocrinologist to know about cancer in detail.

When my SHBG was high, my tT was almost 1000. So I did have a little fT going on (about 3.5). Now that my SHBG is low I can easily pulverize some of the cancer cells with HiT. Interesting that my SHBG dropped on E2 therapy, dropped on SPT (but not nearly as much), and made the biggest percentage drop during BAT.

If I tried to increase my SHBG it would perhaps make LoT more effective at the expense of HiT (although I could probably get away with injecting more T to compensate).

I'd like to see a study of fT vs. PCa occurence.

Yingsang profile image
Yingsang in reply to smurtaw

I do not have the time to research such a study. But your dissertation above, is full of common sense, making use of your library of knowledge.

smurtaw profile image
smurtaw in reply to Yingsang

Thanks.

noahware profile image
noahware in reply to Yingsang

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).

smurtaw profile image
smurtaw in reply to noahware

Something you touch on there is the ability to exercise. Exercise is conventional "medicine". BAT gives me the ability to exercise to my full potential. I use NPP for joint lubrication. A wet steroid. Helps me continue to work out. It's anabolic/androgenic ratio is about 4/1.

Russ506 profile image
Russ506

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.

Hope this helps.

smurtaw profile image
smurtaw in reply to Russ506

Did you start in late November? Are your cycles over a month long?

Yes, that helps. Do you use one 400 mg cypionate shot each period?

Thanks

noahware profile image
noahware in reply to smurtaw

Shouldn't his T be getting far higher than that, with BAT?

smurtaw profile image
smurtaw in reply to noahware

Yes. That's why I thought he might have injected in late November.

Oops. I see what you mean. I thought it was 1113.3 - 113.3. Units though? If it's nmol/L that's about 3200 ng/dl but only going down to 1131 ng/dl. Hmmm.... Perhaps multiple doses, or a bunch of low doses or not really BAT.

Russ506 profile image
Russ506

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 profile image
smurtaw in reply to Russ506

I like that. I try to take a break once a week just to have fun and forget about the guillotine. I know that Nal takes a sabbatical from PCa research a few times a year. It's too easy to get wrapped up in this stuff and forget about life.

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