I have had radiation for a painful Met a L5----

[nuc1111]

I expect the pain to gone in 2-4 weeks-- Can I do BAT if I don't presently have painful bone mets? Also Hopkins say the flare pain lasts only a week. Preloading and continuing with Nsaids should help the inflammatory response responsible for the flair pain. Thoughts much appreciated,Ed

[nuc1111]

Russ,

I love the hope you provide in this dismal environment-

Ed

[Tall_Allen]

I don't think so. The pain is a signal that the bone metastases have progressed and that high dose testosterone can cause further progression. BAT is only for men that have never had metastatic bone pain. What does JH say? They are the experts.

[Tall_Allen]

None of the BAT trials allow patients who are symptomatic. It is part of the exclusions for each. Many of the trials include patients who PSA has more than doubled in a short period after supraphysiologic testosterone. For example in the C arm of the Restore trial:

• Only 4 men (14%) had a PSA decline ≥50% due to the testosterone therapy

• Only 4 men had a reduction in their metastases. All of those had lymph node metastases only.

• Testosterone therapy lasted for 9 months (median) before radiographic progression was detected

• Maximum PSA response was achieved in 56 days. Only 7 patients had any PSA reduction.

•PSA more than doubled in 52%, and increased markedly in 14% more.

• 31% had some radiographic reduction of metastases.

• Median radiographic progression-free survival was 8.5 months

• Musculoskeletal pain was experienced by 40%

• Other prevalent side effects were: hypertension (21%), breast tenderness (21%), leg swelling (17%), fatigue (14%), and difficulty breathing (10%). One patient died of a stroke.

• 18 patients later received Zytiga or Xtandi, with excellent results.

• There weren't any discernable genomic determinants of response.

ncbi.nlm.nih.gov/pmc/articl...

In short, despite my early hopes, BAT is certainly not what I hoped it would be. It provides an ADT vacation in a minority of patients and makes many a lot worse. It does not extend survival. They have so far failed to come up with a plausible reason why it works in some and fails so miserably in others, although I think that AR activity may be a good biomarker. I hope they continue their trials, but it is not something any patient should attempt outside of a closely monitored clinical trial.

[Seasid in reply to Tall_Allen]

Good to know all this. Thanks

[Tall_Allen]

I just showed you that. Re-read. You appear to be cherry-picking, which is dangerous. But It's your life. Be careful about spreading cherry-picked info. While you may be doing fine, others may b e harmed.

[Tall_Allen]

Perhaps you should re-read what I wrote paying extra attention to the underlined lines. I think you aren't seeing them because of confirmation bias.

Ask yourself this question - what evidence would convince me it didn't work?

[Mrtroxely]

Hi all.This bat area is a great hope.

This conversation shows this.

There does need to be a devil's advocate.

Also the negatives need be shined as well as positives.

I looked for real life living evedence of people with experience.

There are small percentages of people who get amazing results from this type bat treatment, fact(looks great for us)

There are small percentages who get zero benifit fact (that's ok, no probs)

There were small percentage who had dramatically awful results and accelerated pain and awful quality of life.

1 guy dead withing few months.

But this remains one of my hopes in this area.

So really gratefull to read smurts findings, techniques.

And putting his money where his mouth is...

Thank you all

Awsome

Hopefull

Factual

Informative

And a light in a sometimes gloomy room.

[nuc1111 in reply to Mrtroxely]

agree-Thanks

[Mrtroxely]

Thank youI feel your energy and fight for something more what's beinf handed to us.

[nuc1111]

👍👍👍

[nuc1111]

Indeed

[Tall_Allen]

I have never side-stepped a legitimate question, but yours aren't. That's because science works by falsification. You are a true believer, not a scientist. You can easily see it in your answer which lacks legitimate endpoints that can be empirically verified. You state " to generate therapeutic responses above and beyond the minimum that I could expect from a simpler less harmful therapy" But you don't state just what those therapeutic responses are. And I think that you'd agree that a large randomized clinical trial is necessary to compare it to SOC, but the lackluster results so far don't merit such investment.

BTW- Johns Hopkins has an IRB-approved protocol for experimenting on BAT. They certainly do consider it experimental and you are quite wrong when you say they believe it should be done outside of clinical trials elsewhere.

Here is a full list of what's been published on the subject so far. Unlike you, however, I am not trying to prove that it works- I am just collecting the evidence on all sides.

prostatecancer.news/2016/09...

So far, BAT has the following benefits:

(1) It gives some men a monthly break from their ADT

(2) It enables enzalutamide to last longer (without prolonging overall survival)

(3) The benefit, when there is one, seems to be limited to man with lymph node metastases only. There is no benefit in men with bone or visceral metastases.

But...

(1) It does not prolong life

(2) In many men, it seems to speed progression of their cancer . In fact, there is evidence (Markowitz) that half the men had immediate radiographic progression on PSMA PET scans. PSMA PET/CT should be used to monitor progression in all clinical trials. Teply found, using a PSA endpoint, that 43% progressed very quickly. The RESTORE C trial found PSA more than doubled in 52%, and increased markedly in 14% more. 69% had no radiographic reduction of metastases, which would have been expected with SOC therapies.

(3) It puts many men (40% in RESTORE C) in a lot of pain

(4) It does not prolong use of abiraterone,

(5) AR activity may be a valuable biomarker, but to my knowledge, it is only available through a Johns Hopkins lab. There are no genomic biomarkers that separate responders from non-responders.

[EdBacon in reply to Tall_Allen]

Is it my imagination, or does BAT have somewhat of a "cult" status here on this forum? It seems like this fantasy treatment where you can get your testosterone back (at least part of the time) enjoys a lot of unwarranted support here. Lots of promotion for something that really hasn't been proven to work. It doesn't seem to matter what the evidence is, people will defend it and promote it anyway.

[Tall_Allen in reply to EdBacon]

Some people don't want to be confused with the facts. I just watched a rather long (almost an hour) video by a doctor discussing the kinds of biases that blind patients and doctors (who should know better). He brings up "mechanistic bias" that occurs when we think there is a plausible mechanism that should work.

youtu.be/NmJsCaQTXiE(Not working as expected?)

I think BAT has a place if more clinical trials provide proof and identifies appropriate patients. All the current clinical trials are targeted to men with mCRPC. Johns Hopkins has abandoned doing trials for BAT for mHSPC, probably because there are so may proven effective therapies now.

prostatecancer.news/2016/09...

I really don't see a difference between it and intermittent ADT for mHSPC. With BAT, you get monthly relief for a few weeks. With iADT, some guys get testosterone recovery to baseline values and can go for months or even years on vacation. In fact, I'd love to see a clinical trial that randomized men between the 2 strategies. The proper way to do it is with a closely watched, patient-informed clinical trial. If they are equally safe, patients should have the choice.

[TomMaloney in reply to Tall_Allen]

Tall_Allen,

I currently have mCRPC.

A while back I had hypogonadism and my PCP prescribed Testosterone to rub on my chest. Well, my Testosterone went from 0% to 150% in an instant (almost).

I became agitated, argumentative, and aggressive. ['roid rage]

what will be the mental effect on men doing this teeter/totter over and over?

[Tall_Allen in reply to TomMaloney]

Not everyone gets roid rage, but I think it is a valid point. All of the hormonal QOL questionnaires are answered by patients. But perhaps the people who have to live with us should fill it out too.

[TomMaloney in reply to Tall_Allen]

Thank you Tall_Allen,

With the 'roid rage, I hated myself. It was a huge personality change.

I was fed up with ADT and on June 30th, 2019 I had a bilateral orchiectomy, which allowed me to drop Lupron Depot, clopidogrel, amlodipine, and meclizine. That orchiectomy was a one-shot deal. I don’t have the balls to do it again.

This got me in touch with my female side and I became nicer and more empathic. Overall I believe it made me a better person.

[TomMaloney in reply to Tall_Allen]

BTW Tall_Allen,

Happy New Year.

However, it is not my dodecagon. I was born in 1941, which makes me a snake.

Monday 1/23, I will get my first Pluvicto infusion at Dana-Farber Boston.

Who can remember the generic name for Pluvicto (vipivotide tetraxetan)?

say that fast 3 times.

Please wish me luck on Monday.

For all cancer patients, caregivers, and healthcare workers,

God Bless Us, Everyone

[Tall_Allen in reply to TomMaloney]

Good luck! Let us know how it goes.

[TomMaloney in reply to Tall_Allen]

TA, Pluvicto knocked me on my butt for 10 days. I am unsure about continuing. I just now entered a new note about a metastatic retrocrural lymph node that has me terrified. I would appreciate it if you could check the post and comment on it. I have messaged Dana-Farber about it. Thank you

[nuc1111 in reply to TomMaloney]

BAT Are there others who would like to share their experience with BAT?

[gsun]

What is the name of your book?

[Bethishere Administrator]

I hope the prostate cancer charity you donated to was Malecare

[nuc1111]

Russ

I’m on Lynparza and orgovyx and kept my pad 3-4 range.

Wondering what testosterone level I should shoot for with androgen 50 mg packets-don’t know if I can get high enough with dermal route.

Used 4 for the last 2 days.

[nuc1111 in reply to nuc1111]

sorry Psa 3-4 range