Hey guys - I’ve been through the fire and made it out the other side. I’ve been stage 4 for 9 years. Currently on pembroluzimab for last 5+ years (47 infusions now).
I stopped Lupron over a year ago (14mo). I had been on Lupron for the 8 years prior. My PSA is slowly creeping along with my low T. PSA is now 0.09 and T is 95. It’s been fluctuating between 90-158 for the last several months.
Wondering if it might be possible to get back to normal. I’d be curious as to what you think about the risk of TRT waking the Dragon? I know we’re not supposed to think about curing stage 4 - but pembro is just different.
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Chugach
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Happy to hear you are doing so well on Pembro and off ADT to allow T to recover. Unfortunately many never regain normal testosterone levels. So TRT is perfectly reasonable to do the same thing. As long as you monitor as it can be stopped if PSA takes off. Even in that case it is unlikely to be harmful, just as BAT trials have demonstrated. You would like having normal T even for a little while. Do you have a HRR gene mutation that favors the PARPi?
You may want to research the papers by A. Morgentaler, Harvard University school of medicine. He has written extensively on the advantages of having high testosterone levels concurrent with advanced PCa.
I'm currently taking TRT after 6 months of Orgovyx, and it's important to monitor PSA and T every 1-2 months to watch for a gradually increasing PSA.
Yes - agree with you JaneBob. Dr. Abraham Morgentaler's long career as a urologist and frequent prostate cancer/testosterone published clinical study leader has been interesting and arguably groundbreaking.
The many Dr. Morgentaler You Tube interviews on this subject should be worthy of consideration.
Thanks for the tip - I’ll check it out. I did a high T clinical trial back in 2019. My T hit 1200 and my cancer kinda went crazy. But that was before pembro.
TRT can, indeed, "wake the dragon. I would consult an expert about this such as Morgantaller in Boston or Dunmeade at Hopkins. This should be done under the watchful eye of an experienced MO.
RoseDoc - do you have any links to studies indicating this? Since I'm on TRT currently I'd be very interested in reading those studies. The only study Morgentaler could find was decades old, and it turned out it was based on incorrect results from one individual. I haven't seen any mention of recent studies that confirm that statement. The recent studies seem to indicate that if the patient's PSA has stabilized, and your T dropped below the normal T level for someone the age of the patient - there haven't been any indications of "waking the dragon" by bringing the patient's T back to a normal age related value, and there were indications of a lower mortality both from PCa and comorbidities.
This is, generally, not a recommended treatment. There are those who are doing it and closely monitoring their patients. The two names I gave you are the most well known. This is not SOC at present time.
Mine is being monitored by a leading oncologist, and a leading endocrinologist at Columbia/Presbyterian. I don't think too many of us here feel bound by the "SOC" since it seems to lag behind the actual science by a decade or so.
A fwiw: My treatment (G9, 3.3PSA) was radiation/ADT. Very good and steady PSA numbers off ADT. After about 6 months my T naturally came up to around 350 and I started feeling much better. My PSA closely tracked my T (about a 1 month lag), and settled in at around 0.22.
Then my T dropped like a rock, and the ADT symptoms started coming back.. (lethargy, tired, weight, moobs, etc.). PSA around 0.18, T around 130.
I did some reading and decided to talk with my MO about TRT. We had the Quality vs Quantity discussion, and I decided to go ahead with TRT with very close monitoring (I'm 78 - if you're younger it's a different equation, I only have so much time anyway.).
At the time we started my PSA had dropped to 0.09. My goal was - normal T level for a healthy male maybe 60 years old (I'm older, but why not?) Currently my T is around 600, and my PSA has moved up to 0.22, then settled back down to 0.20 (probably identical actually.) It's exactly where it was when I naturally recovered my T. And I feel MUCH better. I can now walk a short distance (I was losing that ability), I can do 4x the exercise on the stationary bike, and will be starting back with the weights soon. My back is getting better. I no longer have crippling leg cramps at night. We're achieving what I hoped we would.
I have a visit with my MO tomorrow. I expect he will be quite happy with our results so far. I'm going to keep with a 6 week test schedule as long as the numbers are steady. If anything changes I'll reconsider that - but right now - I just purchased 3 months worth of injectors for T at a rather extravagant cost. I'm that confident that it's the right thing for me.
Though SOC is at times behind the latest research. Physicians are held to SOC in the event anything goes awry. Explains why not all are willing to try the newest treatments right away.
I wish you continued success. I would be interested to see how things work out for you.
Have you considered T-cream that is applied daily? It might be considerably cheaper.
I get my T-cream from my local compounding pharmacy for $50 a bottle, which lasts about 2 months. I apply one pump daily to my scrotum, which has 5-8 times better absorption than forearm or shoulder application (due to the low fat content of the scrotal skin). High concentration (10-20%) compounded T -cream (or gel) may be about 1000 X cheaper than your T injectors.
The difficulty (my understanding) with the cream, aside from the need to do it twice daily - it is hard to get a really consistent dose. The injector gives a very exact dosage, easily repeatable.
I have a friend who dropped out of medical school (boy was his mother upset) who uses the cream and recommends it - but my MO teaches at a leading medical school and he recommended we do the injections. Who to listen to?
No doc gets paid for doing the injections - if they did Medicare part B and my supplement would cover it at 100% (just like they did in-office Lupron injections.) I shot it up myself.. That's Tuesday's shot. There is one on Tuesday, one on Thursday and one on Saturday - have to go do that one now.. it's waiting for me.
Just a quick update - convo with my MO on 03/21/25 - he's delighted with the results so far, and we're going to a 2 month PSA/T test schedule. We had been doing 6 weeks. I can usually sneak an extra one in there if I get my GP to script one up for me. He said if we get steady results with the 2 month ones - in 6 months or so we might consider going to where we were before we started this experiment - at 3 month test intervals.
He was quite happy with the quality of life improvements I reported, and also happy that my blood-pressure doesn't seem to be spiking due to the added T.. funny - my other blood labs also seem to have improved with the TRT - my liver and kidney functions are now within normal range for a old geezer. My RBC and other blood related numbers indicate I'm no longer semi-anemic.. all good stuff. None of the other test result numbers moved toward bad - most moved toward good numbers.
My husband was on Lupron & Casodex for 9 months after his Prostatectomy revealed +nodes. That took his PSA down to undetectable levels. He lived for 16 years with no further treatment (active surveillance). His testosterone rebounded on its own. He had a variety of other treatments after that but the experience with the short term Lupron was wonderful.
What's the lowdown on Testosterone Replacement Therapy (TRT) and Prostate Cancer.
From King A and Queen I.
ChatGPT said:
Testosterone Replacement Therapy (TRT) is commonly prescribed to men with low testosterone levels (hypogonadism), which can result from aging, medical conditions, or other factors. The therapy aims to restore testosterone to a normal range and improve symptoms like low energy, mood disturbances, decreased libido, and muscle mass loss.
The link between TRT and Prostate Cancer:
The relationship between TRT and prostate cancer has been a topic of controversy and research for many years. Here's a breakdown:
1. Prostate Cancer and Testosterone:
Testosterone is a key driver of prostate cell growth, and in theory, increasing testosterone levels could potentially stimulate the growth of prostate cancer cells if they exist. This concern stems from the fact that prostate cancer often grows in response to male hormones (androgens), including testosterone.
2. Historical Beliefs:
For a long time, the prevailing belief was that testosterone therapy could fuel the growth of prostate cancer, particularly in men who were already at risk or had existing prostate cancer. As a result, testosterone therapy was typically avoided in men with a history of prostate cancer or in those with elevated prostate-specific antigen (PSA) levels, a marker often used to screen for prostate cancer.
3. Current Research and Understanding:
Recent studies have challenged the idea that TRT directly causes prostate cancer or worsens existing prostate cancer in men who are already cancer-free or in remission. Some key points from current research:
Men Without Prostate Cancer: Studies show that TRT does not appear to increase the risk of developing prostate cancer in men who are otherwise healthy and do not have a history of the disease.
Prostate-Specific Antigen (PSA) Levels: TRT can cause an increase in PSA levels, but this doesn't necessarily mean cancer is present. It's important for doctors to monitor PSA levels carefully when prescribing TRT.
Existing Prostate Cancer: For men with prostate cancer, TRT is generally not recommended, especially if the cancer is active or high-risk. However, some research indicates that low testosterone levels may be a consequence of advanced prostate cancer, so addressing low testosterone could potentially be helpful in certain cases, but this must be handled with extreme caution.
4. Screening and Monitoring:
For men undergoing TRT, doctors typically conduct:
Regular PSA screenings
Digital rectal exams (DRE)
Monitoring of testosterone levels to ensure they remain within a safe range.
5. Key Takeaways:
TRT is considered safe for most men without prostate cancer or significant risk factors, but regular monitoring is essential.
Men with a history of prostate cancer or high PSA levels should avoid TRT unless they are closely supervised by a healthcare professional.
There's no conclusive evidence that TRT directly causes prostate cancer, but caution is necessary in men with pre-existing prostate conditions.
In short, while there's a theoretical risk that TRT might exacerbate prostate cancer in certain individuals, the current evidence doesn't definitively support that it causes prostate cancer in healthy men or worsens it in those without active disease. However, if someone has a history of prostate cancer or elevated PSA levels, TRT should be approached with great caution, and regular medical monitoring is essential.
I take it that the jury is still out on TRT and we are in uncharted territory. Thanks for running to the all knowing Herr Chat for his “unbiased opinion”.
honestly this will have to be your call with very close surveillance. I had a doctor who told me of a guy that came to him with severe pain in lower back and hips. Tests revealed psa of over 7000 and extensive spread through bones and nodes. He got 2 shots of Lupron over 3 months tempered with 30 days casodex. He never returned for futher treatment until he had hip pain many years later. Figuring it was the cancer again he went back to the urologist only to find no cancer and a psa of 1. He had a hip replacement and went back to his farming.
There are two ways of looking at this. One is the way the uro who looked at the guy did. He told me this is a one in a thousand case. When I told my new uro the story he said it could be a one in one case but nobody has the courage to really try it.
I had G9 with prostatectomy and appearance of a bone (T8) met within 6 months. SBRT. Four months later rapid PSA doubling with pelvic nodal met on PSMA PET. Went to Johns Hopkins and had triple therapy and 2 months later pelvic radiation. Off Lupron after one year. Undetectable PSA for >2 years but T never returned. My JH MO put me on TRT. Feel so much better and actually turn my head now when a pretty woman walks by! PSA remains undetectable 4 months on TRT. It's all individual and up to you and your physician. Not for everyone.
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Zytiga failure after 4 years what now 
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