I previously posted about my proposed personal experimental "trial" of high dose cyclic testosterone therapy for my severe hypogonadism (testosterone deficiency syndrome from ADT). Now I have completed both parts of the initial cycle. Note that this is NOT a formal clinical trial. It is a personal experiment of an unproven therapy in my context of non-metastatic hormone-sensitive advanced PC.
My PSA over the past 16 months (following PLN RT and 6 months ADT) has been low but not undetectable. My prostate and pelvic lymph nodes (including 2 PSMA positive nodes) have been previously treated. So I presumably have micro-metastatic: cancer somewhere at sites unknown, similar to BCR. I am going to have a repeat PSMA PET scan done next month.
My experiment with cyclic testosterone is being done with the knowledge and cooperation of my MO, but only after much lobbying, and finally support from another clinician, Michael Schweitzer in Seattle who is an active researcher in the BAT trials. And furthermore, giving written informed consent of my acceptance of the risks, known and unknown.
Yesterday I had an additional video consultation with Dr. Tomaz Beer at OHSU, who also gave a vote of support for my use of cyclic testosterone at this time.
My hypogonadism was not just unpleasant symptoms such as hot flushes, etc. But I had lost much muscle strength and lean body mass to where I had a spinal disc collapse resulting in nerve root compression requiring 2 surgeries over the past 2 months. And my body had not responded to high-level resistance training. My weight and strength just kept dropping (called sarcopenia).
Previously it has been noted on this site that, in the BAT (bipolar androgen therapy) clinical trials for advanced prostate cancer, that is was not possible to predict which patients would respond favorably to BAT and who would respond adversely with rapidly and persistent rise of their PSA. However, it was possible identify who was responding favorably and who was not. Essentially all PCa patients have some rise of PSA when starting testosterone. This is a permissive effect from overcoming the suppression of castrate T levels. But for favorable responders, this was a moderate rise that did not continue. Their clinical course on BAT was benign and in many cases beneficial clinically. I won't review the BAT trials results again here as this has been done. previously. Unfavorable responders to BAT had persistent and progressive rises of PSA. In the trials those patients stopped it and were removed from further participation in BAT. The trend was that their PSA, back on ADT, dropped back down and there were generally seen to not have progression clinically on scans.
My experiment was to do one test cycle of one month of high dose testosterone. Then I would do one month off testosterone and monitor my PSA. This should indicate my personal response to testosterone therapy and indicate whether I am a "favorable" responder at this time.
My starting PSA, most recent before testosterone, was 0.081, very low but not undetectable. I then did 200 mg of intramuscular testosterone cypionate weekly for 4 weeks. After that my PSA went up to 0.180. This I took to be an acceptably moderate rise. Then in part 2, after 5 weeks off testosterone (and no added ADT), my PSA came back down to 0.123.
To me and my physicians, both my MO and Dr. Beer, this suggested that I may reasonably do more cycles of T-cypionate, perhaps one month "on" and 2-3 months off (to be determined) without undue risk and enjoy great benefit to my well being and hypogonadism. I am re-gaining muscle and strength after my surgeries and feel excellent.
Dr. Beer said yesterday that my current and proposed use of cyclic supra-physiologic testosterone: "It is unlikely to be dangerous (for me) to try intermittent exposure to testosterone in the near term." He also added that I should not add ADT during the off cycles initially, but only if indicated by PSA rises. And then he would consider relugolix (oral ADT) for the fast-on and fast-off properties.
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MateoBeach
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Great stuff, thanks. Have you considered extending the "on T" period to more than a month? Do any of the docs have strong opinions regarding this, with respect to either potential benefits or potential harms of longer SPT?
I'd also like to know what they think of this (longer SPT time).
I did a 5-6 month leadin with estrogen patch ADT, Zytiga, and then Casodex/dutasteride. I've been dosing 400 mg/wk of cypionate for about 18 months now. PSA fluctuates between 0.02 and 0.06. Currently 0.039.
I was diagnosed T3 b/c, local lymph nodes, bladder wall, seminal vesicles, Gleason 4+5.
Fat loss and muscle gain are of course nothing short of amazing to me. 3 years ago, before my diagnosis, I was 195 at 18% body fat. Now I am 195 at 10% body fat. My hematocrit, etc, are fine. I take an AI or my estrogen would likely cause problems.
Did they happen to define the PSA rise? ("He also added that I should not add ADT during the off cycles initially, but only if indicated by PSA rises.")
Similar to you, this was what I decided to do. Stick with SPT until my PSA goes over some threshold (or PSADT decreases - my PSA is too low and hasn't monotonically increased so I can't define PSADT yet). And I figured relugolix for ADT if I need it. My endogenous T is probably zero so I don't know if I would need any help going to zero T.
It did not come up yet. But I’m thinking about it. Depends on how stable the PSA response is. Dr. Morgentaler has some patients on: Three months on SPT then one month enzalutamide. Presume ADT continuous through that. Will be interesting when he reports it. I suspect standard BAT may be too rapid of cycling for slow growing PC.
Hello MateoBeach: I appreciate the documentation you have done and will reference it when I try the same in about a year. Your statements about negotiating with the doctors helps a lot. Good work, and hello from the Willamette Valley! I was on Dr. Beer’s waiting list, but I decided to stay with Dr. Graff who was trained by Beer (she’s just “fun” on the virtual calls).
That’s great Mark. Graff’s connection to Beer (the doc not the beverage!) should help garnering support if your clinical situation is appropriate for it. BTW I’m in Bend. Perhaps we can connect IRL someday.
IRL…. it’s been like 15 years since I’ve been to Bend for the kid’s soccer tournaments. I’ve got to make an effort to visit again and will certainly hit you up. As for sarcopenia, I think I lost about 15 pounds of muscle now, going from 175 to 160. I am quite concerned now about my bone, as I am heading towards osteoporosis. Sounds like the weights didn’t help you, and since I hate weights I’ll just skip that routine. Maybe find an inversion table at a garage sale. Happy friday! beautiful weather we are having!
One month of test is not long enough I feel - my reason is that test c has a half life of 5 - 8 days so you need approximately 6 half lives to reach full benefit of 200mg - not a doctor but am on TRT for almost one year - PSA still <0.01. I use 120mg a week via daily IM injection using an insulin syringe.
I wish you well in your experiment. I do have a question related to, “My starting PSA, most recent before testosterone, was 0.081, very low but not undetectable.” What is your source for 0.081 being NOT undetectable?
I ask because since 2003 I have lived in a world of <0.1 as undetectable.
Standard PSA tests often have sensitivity down to 0.1 so undetectable is <0.1. This is ultrasensitive test where undetectable is <0.01. So result indicates there is still some small source from cancer, micrometastatic. Because I have no prostate nor known mets on scans. Regular test is fine for most decisions.
Thanks for asking. So far for me after 3 cycles of two months on SPT 400mg T-cypionate every two weeks, then one month with no T. My PSAs have only gone from .08 up to .095 at the end of the off months. And that is without any ADT. My testosterone level only drops to 80. At that time. Very happy with this so far. Feel excellent and much stronger. When my end of cycle PSA rises to 0.20 I will add ADT to the off month, probably with a single Firmagon injection of 80 to 120 mg. Two weeks after the last T injection.
That's right in line with my question about considering longer "on" periods of high-T. My understanding of Dr. Bob's approach was that men who wanted to try high T would just stay on it, indefinitely, until there was some reason not to. That reason was usually a sharp and sustained rise in PSA, but in his lectures you can see many men experienced a worrying trend of increasing PSA that unexpectedly leveled off, or even decreased.
The question, as always, is: what about the men NOT so lucky to have PSA stabilize while on sustained SPT? Dr. Bob surely had many of those as well.
So I would say this approach differs in that it cuts off the period of SPT without waiting to see what sort of wild PSA ride might occur with more extended time on SPT.
When we went to Compassionate Oncology Oct. of 2020, we didn't get to see Dr. Bob, but saw one of his associates. The current SOC they are using, at least in my husband's situation, was no different from what was recommended as SOC from the local MO, so we don't consult with them at this time.
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