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Low Testosterone
It has been 15months since I stopped ORGOVYX after being on it for 1 year. My PSA stayed at 0.03. My Testosterone during ADT dropped to 8. But after I stopped ADT, it went up to 85. But now it is 46. PSA is 0.03 My Gleason Score 9 but cancer was in the gland and I was treated with 5 sessions of SBRT at UCLA. I am 90. Any one in this situation?
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@pesquallie
Yep, you do bring up an important issue, The older you get the less likely your testosterone will come back at all, Much less to normal level levels.
As mentioned by by Doctor Weber in his PCa commentary
The extent to which T is suppressed depends on a patient’s age and the duration of anti-
androgen exposure, and both those factors also influence the rate of T recovery after ADT is
ceased. At a T level of <230 ng/dL a man is said to be “hypogonadal” and symptoms from a
diminished T commence - to different degrees in different men. After 3 - 6 months duration of
Lupron or Relugolix treatment 65% of men will still be below <230 ng/dL at 12 months after
stopping.
If someone has a serious case of prostate cancer at 80+ It may make sense to use ADT, It depends on the person, their health and their mental attitude. You can always give testosterone injections after treatment is completed.
@brownsf Off the top of the head I think PSA returns on its own but, supplementation will fuel the fire once it does. I got up to 230 post adt and just dropped to 175 over the past 3 months. I will get retested in case it is a fluke. Have to say I am feeling run down with low energy and have to force myself to do anything. I was diagnosed Gleason 9 Grade 5. It is my understanding that those of us that do T therapy they test more frequently. At some point I would be willing to give it a try to see if it improves my quality of life. More research with doc's on my part needs to be done. One side of me thinks if it doesn't cause psa to return why not try it.
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2 Reactions@jimgaudette
73 year old five years ago diagnosed with G9, had prostatectomy and then discovered a solitary met at T8 successfully treated with SBRT. Continued rise in PSA prompted triple therapy successful with PSA< 0.1 for 3 years. Only on Lupron for one year but T never got back above 40. Unlikely to return to normal at my age. A year a half ago my MO at Johns Hopkins put me on TRT. Complete reversal of all of the side effects of low T. Energy restored, muscle mass returned, no more hot flashes, mood improved, libido back (!) etc etc.
Complete ED after my surgery in 2021. Tried vacuum device and Trimix / Quadmix with diminishing efficacy. Had penile implant recently. I wish I had done it 5 years ago! Wonderful!
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3 Reactions@mccannr
Absolutely incorrect. I am 73 with G9 and oligo metastatic disease. After aggressive triple therapy and radiation at Johns Hopkins, my T never recovered off all medication. My very experienced MO (>500 peer reviewed articles on prostate cancer diagnosis, treatment and cause; full Professor in 3 departments at JH; Director of the Brady Urologic Institute at JH; etc) actually recommended I go on TRT after almost 3 years undetectable PSA with T never recovered above 40. He said "you are a 70 year old man living in a 90 year old body".
There are many experienced, knowledgeable MOs that believe TRT in selected prostate cancer patients is beneficial. No doubt that quality of life is improved. There are serious detrimental health issues associated with long term T deprivation. Prolonged T reduction may hasten the development of more aggressive forms of prostate clones that do not need T to proliferate.
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3 ReactionsI'm in my early 60s and after six months of Orgovyx it took 18 months for my testosterone to return to normal. It's 100 points lower than it was pre-treatment but I'll take it. I *do* wish doctors had told me ahead of time that recovery can take that long. When he originally said "six months" I assumed six months, not a total of 24.
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1 Reaction@retireddoc
I am 90 years and 9 months old with T level is 46, feels like living in much older body!
Can you please give me the name of the MO at JH? I want to ask him if my age and G9 cancer is a big factor in choosing TRT. My Oncologist Dr. Scholz encourages me to try TRT and says if cancer comes back, we will treat it. I didn't know there is also a risk in living with TRT other feeling lousy! I also consult with an oncologist at UCLA who says it is a personal decision.
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1 Reaction@ava11
Hi! Unfortunately, my MO isn't seeing any new patients. I tried referring someone to him around a year ago. His name is Ken Pienta MD. He spends most of his time doing prostate cancer research.
He said pretty much the same thing to me. I needed testosterone in my body and if the cancer returned we would deal with it. Because my PSA went undetectable for 3 years after triple therapy and radiation he said the more aggressive clones were killed and if the cancer returned it would be "a kinder, gentler" form that we could treat more easily.
I am all about risk / reward. My life was pretty miserable without T and is great with it. So, I am willing to take a chance that the T could reactivate the cancer. Many guys get off ADT and their T goes back up to normal range. Taking exogenous testosterone (TRT, Androgel) is no different than if my T had returned to normal on its own. Cancer cells can't differentiate T from a gel or shot to that manufactured by testicles. Some molecule.
Good luck!
Well
With a GS of 9, having your PSA stay stable for 15 months after stopping ADT with a modest T recovery to the 40-90 range and age 90, well, not bad.
One of the questions might be, have the side effects of systemic therapy, hot flashes, fatigue, muscle dnd joint stiffness...subsided with the cessation of systemic therapy...?
How do you separate out symptoms of aging versus symptoms from "low T?"
Good question, I had mine checked this week as part of my Medicare annual wellness consult, 455, Free T 79.
My PCM in response to my comment that I felt fatigued still, you're 70...was his response.
I go to the gym most every day, 45-60 minutes on the bike, resistance training, swim 500-100 meters, hot and cold tub.
Other days I ride my bike outside 30-45 miles. Vacations often involve hiking, skiing...
This year I've ridden my bike in two vets, one was 55 miles, the other 50.
So, am I tired because of what I do, my age, or combination of both...? Probably the latter. Would boosting my T to say 700-1000 fix the "tiredness?" My PCM thinks not, age is the dominant factor from his experience.
My PCM asked if I take naps, yep, most afternoons!
Recovery of T is a function of age, baseline T, which agent, how long the systemic therapy was...
We generally know the older you are, the longer you are on systemic therapy and the agent, Orgovyx vs say, Lupron, impacts recover, that recovery may be slow and minimal.
What's normal, well, I've seen 300-100 tossed around as @jeffmarc has said.
What about TRT? Keep in mind there is a school of thought that says any T is fire for the fire and any T is bad...
As I say, caution about statements that say any, all...if that were the case, why have I enjoyed treatment vacations of 5 and 2+ years after de-intensification? My T recovered in both cases to 400+ in the first year.
You could discuss TRT with your medical team, would it solve your concerns you mention, maybe, would it be fuel for the fire, maybe?
If the latter, you may have treatment options such as estradiol, ARI monotherapy, MDT only that don't involve castration.
You may still experience some of the side effects.
What would I do were I you?
Tell to my medical team about TRT. If they support doing so then have discussion about non-castration treatment options should you have recurrence. Also, discuss what constitutes recurrence, will you image, if so , at what PSA, with what?
Manage my health through moderation, diet, exercise, stress...
Take the damn nap...
Kevin
@kujhawk1978
I’m 78 and really don’t have much fatigue. I definitely am not as active as you seem to be, I just walked a mile on grass, Uneven ground does tire one out a little bit, but I get back home and I’m not tired. If I walk on the track instead of the grass, I don’t get tired. Walking on grass is supposed to be good for balance and with all the drugs I’m on balance is important.
If I was as active as you are doing extensive exercises, I would be tired I suspect.
Last night, my wife and I went dancing and we were doing swing dancing pretty hard for about an hour and a half. The band was playing some pretty Fast tunes. I was sweating at the end. I wasn’t really tired. Stayed up till after midnight. My wife was nodding off.
Yes, I do take a nap in the afternoon some days, 25 minutes. You really don’t want to do much because then you can’t sleep at night. I find I need to do that when I only sleep six hours versus 6 1/2.
I think stamina is really dependent on your heredity. I’ve been on ADT for eight years my Testosterone is Around seven. I go to the gym spend an hour working out and then come home and 15 minutes later I’m out walking a mile.
If I had normal testosterone, I can’t imagine how much More stamina I would have. I can’t do TRT because of the BRCA2 problem.
@retireddoc
Is it true once you start TRT and if you stop, there is no chance natural production of Testosterone? In other words I need to be on TRT rest of my life to feel good unless cancer comes back.