I was dx'd stage 4, G8 in 2018, at age 49, after 44 EBRT sessions and one year of ADT/lupron, I rejected any further ADT after experiencing horrible, life altering side effects and learning about it's actual efficacy.
My PSA kept rising ever so slightly, so I pushed for a PSMA PET scan for two years, to receive it April 2021, discovering a 3mm tumor in my sacral lymph node, hit that with 5 SBRT treatments in August 2022.
After looking at the research of Dr. Morganthaler and Dr. Friedman, I started looking for TRT providers. I had low free T and low T for years leading up to my diagnosis, which is where the problem seems to lie, having hypogonadal levels and/or low free t, can lead to more aggressive PCa.
I finally found a doctor what would work with me on TRT and started a year ago, January 2022.
My PSA went up slightly, which is to be expected, so my team at UCSF wanted to do another PSMA PET scan, which I just received on Friday the 13th, my results were pretty much NED, after a stage 4/G8 dx in 2018 and one full year on TRT.
I had a zoom call with my team at UCSF and decided to tell them about the TRT, which they took quite well. They understand I will never inject ADT into my system again, so they're willing to work with my on TRT, which is pretty amazing I think.
I've started a TRT and PCa page on facebook, if anyone would like to join.
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babaxiong
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I know smurtaw, chugach and mateobeach are all doing BAT or TRT if you search for them on this group. I imagine there are others too. Also, search for BAT in the box top right and they’ll come up I think.
Welcome to the fraternity of those doing well on individualized, modified BAT: the BATmen. My story is similar to yours. You can read details in my prior posts. I am a proponent of adaptive therapy over continuous treatment until eventual failure. Therefore, while I feel so good in body and mind while on high T, I alternate periods of castrate testosterone to disadvantage any AR+ PC sub populations. There is no standard formula for this. Very short cycling in the original BAT. Other, long cycle regimens are in trials. My cancer seems very indolent and not aggressive and am HSPC and trying to stay that way. Currently I do 8-10 weeks of high T (T-cypionate 400mg every two weeks) then transition the last few weeks to rapidly clearing T-gel topical. Then one month of Orgovyx ADT. So about three months on TRT and on month ADT.
Smurtaw solves it currently using shorter acting T-propionate, 100mg every few days. Pjoshea13 has his own regimen, I believe is more like Morgentaler tested and described. Send me a PM if you like to share contact details and I will respond with same. But I strictly will not do any Facebook. Regards, Paul
anyone doing TRT? Those currently doing BAT, did you experience CRPC? I've been on TRT for the last year, everything is stable and latest PSMA PET scan was NED....told my team at UCSF I've been on TRT for the last year and they were pleasantly okay with it as I told them I have every intention to continue, for the balance of my life.
Yes, I am on TRT for 6 months now. My PSA has only gone up .o1 and my MO was surprised. Please message me your Facebook page name and I will join. I would also be interested to set up a monthly Zoom call for men on TRT and BAT to share.
Hi, I would join a monthly BAT guys zoom meeting. I will adopt the word "adaptive BAT", seems appropriate for I'm doing. I'm also doing MDT (metastatic directed therapy). One of my oncologists documents that "Mr. xxx is self-directed". I rely on expert advice and support, but after 18 years Docs tend to trust me. I've called it being ready to pivot. I get a couple of lymph nodes per year that are surgically removed. I'm refining this strategy, 28 day cycle, 150 mg T Cyp on day 1, 3 Androgel pumps days 1-14, gets me up to 12-1400 T, then drops off, hopefully to 50 by the end of the month. I take 80 mg Xtandi per day for days 18-22. My PSA has stayted undetectable <.006 for a while. I don't make any T, so I don't need an ADT drug. I feel good all month long.
I've been doing BAT for 2 1/2 years. I'm not CRPC. No mutations and my ctDNA has dropped to zero. But two recent mets.
None of the five HSPC BAT men who I follow have gone CRPC.
Two men were CRPC and are now HSPC. One of them is in the Netherlands and his MO is sending him to a testing facility to try to find out what is going on.
It appears that the common link is to use an ARSI or modify your cycles (longer ADT time if you use cypionate) or use faster acting T forms like propionate.
you can message me your Facebook name, it share it here. I’ll join you on there, but i haven’t tried bat yet. Just trying to figure out where to get a doctor to supervise it.
TRT is an acronym for testosterone replacement therapy, primarily used to treat low testosterone (T) levels... which of course all of us on ADT have!
The idea of BAT is that you must alternate high and low T, whereas with TRT you just stay with the high T and see how that goes. Maybe the first (and only?) MO of note to try this on PC patients on a regular basis was Dr. Bob Liebowitz, of Compassionate Oncology, starting about two decades ago.
After about a year of ADT (+chemo), he would put some of his patients on high-T. According to his case reports, many of these men would experience an initial rise of PSA that would then stabilize, and they would stay on high-T (TRT) for months or even years. Those whose PSA kept rising would of course go back on ADT.
hi babaxiong. Been wanting to start a Facebook page. See you there. The testosterone issue is something I’m interested in. Mine is finally coming back some and psa moving with it as it will.
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Why would a metastasis “disappear”
5 months after stopping the 4 mos of taking orgovyx still very symptomatic of low t (miserable)..told t may never recover (79),take trt? ?
Failed RP & SRT; Negative PSMA PET
Yet another fork in the road
Enzalutamide (Xtandi): Start at half standard dose to extend efficacy time span?
