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Anyone have testosterone replacement therapy (TRT) after ADT?
I had SBRT radiation treatment and stopped Orgovyx after 12 months.
After 2 1/2 months my T went up to 65 from a low of 8.
My oncologist says he is open to undergo TRT, but my RO says I should wait 12 months to consider TRT.
Fatigue is my main issue.
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@retireddoc
Thank You for your post.
I understand, if I go on TRT, I have to be on it for the rest of my life because Pituitary gland stops signaling to produce T naturally. Is that true? Don't I have to stop TRT if my PSA keeps raising at some point? Does it mean I will be on TRT intermittently?
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1 Reaction@ava11
Please let me preface this reply that nothing I may say takes the place of discussion with your treating physician. Having said that, it is generally true that if you are on TRT for an extended period of time (especially later in life) your pituitary gland stops producing LH/FSH and your testicles will no longer be able to produce testosterone in sufficient amount. My MO at Hopkins told me if I started TRT it was for life.
TRT in the setting of prostate cancer is, of course, controversial. I believe more urologists/MO/RO are beginning to believe that certain patients benefit from TRT if their T doesn't rebound after ADT is discontinued. I suspect that most experts would discontinue TRT if PSA is rising and maybe start again if PSA becomes undetectable for a period of time after therapy.
My personal, anecdotal experience is TRT was a game changer regarding my well being and amelioration of symptoms related to low T. QOL is very important to me.
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2 Reactions@seasuite I gather than four months is very much on the short side of duration usually involved with Orgovyx, so your report is doubly interesting. I am curious about TRT especially when natural recovery is not seen.
Might I ask your approximate age?
I gather there aren't any other preexisting medical issues that might also be involved?
Thanks.
No worries Bro, I'll be 74 at the end of April. I eat a mediterranean diet and exercise daily. I ran a 5K while I was just starting Orgovyx. I haven't been able to run, even a 12 minute mile, since the 'crap' took over my system...as you can tell, I'm not happy with these life long side effects and would most likely not have taken the drug given my serious, but, highly speculative PCa diagnosis. 4 months is a very short prescription term.
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1 Reaction@retireddoc
Are there any studies for Gleason 9 biology, when it is safe to go on TRT? I am Gleason 9(4+5).
It appears most studies are on Gleason 7. It has been only 8 months since I stopped Orgovyx.
I want to be conservative and wait another 4 to 10 months before considering TRT.
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1 ReactionTo the best of my knowledge, there are no specific studies regarding safety of TRT specific to Gleason score or even precise timeframe after cessation of treatment or length of undetectable PSA. For me, having a very experienced MO familiar with the literature/studies with his/her own database of treated patients can provide the best guidance. We (the patient) must weigh the QOL derived from TRT against the possibility that the testosterone will stimulate growth of any dormant prostate cancer cells. Tough call.
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2 Reactions@retireddoc
In my case, it is even more confusing because of my age. I don't know how much of the low energy and fatigue is from low testosterone of 65 vs just getting older. I don't want to go through TRT and get very little or no improvement!
After I work out in the GYM for an hour with trainer with no problem and try to walk to a restaurant, it is a stop and go with low energy and fatigue. I am assuming that is from low testosterone not my age?
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1 ReactionI am 72 and have been very active my entire life. The 2 years I had testosterone near 0 I was very fatigued with little energy or enthusiasm. Hot flashes, muscle wasting, no libido (yes, that's still important to me), mental fog, mood swings and depression. I also wondered how much was age catching up to me vs. very low T.
The last year on TRT has been totally different. Hot flashes gone within a month, I have regained muscle and functional strength, my libido is back like it was years ago, my mood has brightened, the fog has lifted. My body hair has regrown and I have lost some fat around the middle and upper thighs. And this doesn't include the changes that I can't feel or identify. Like improved bone density and cardiovascular health. Like my MO at Hopkins told me right before putting me on TRT- "You are a 70 year old man living in a 90 year old body". And he was right.
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1 ReactionSee article attached. As soon as I complete radiation, I will be back on TRT. There are numerous health risks of extremely low testosterone that in my non-medical opinion, far outweigh the risk of dying from prostate cancer that has been treated. See also the Protect T trials comparison of RP, radiation and doing nothing. You will be surprised by the findings. I'm a Gleason 4+3 and 3+4. If my decipher weren't .84 I would do nothing.
Testo Replacement and PCa Article 4-29-25 (Testo-Replacement-and-PCa-Article-4-29-25.pdf)
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1 Reaction@tk192
Thank you for sharing the article. I am a patient of Mark Scholz. He is open for TRT for me. I am just hesitant since my symptoms are tolerable for me. He says if cancer comes back, we will treat it. Not so easy for me to accept that!
You say you will be back on TRT. Were you on TRT prior and you had cancer recurrence?