Testosterone replacement after radiation and Orgovyx?

Posted by brownsf @brownsf, Dec 9 1:16am

I had an RP in 2008 and a recurrence last year. I was treated with 5 months of Orgovyx and 37 radiation sessions, both of which ended about 18 months ago. My PSA has been undetectible since then but my Testosterone seems stuck around 160-180. I'm considering testosterone replacement therapy. The main symptoms I'm having from low T are tiredness and weight gain. The doctors tell me they would monitor my PSA and testosterone monthly if I begin T therapy and stop it if my PSA increases---but there's a small chance that stopping the T therapy would not restore my PSA to undetectable. They would not quote any odds. So I'm torn--it would be nice to be less tired and reverse the weight gain but after surviving the cancer and recurrence, I really don't want to go through it again. Of course, I can always wait longer to make a decision since there's a small possibility my T could still come back on its own. I'm wondering about the experience/advice of others who have been through this.

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@northoftheborder

I'm 60 now, so younger than you, but still not a spring chicken. My testosterone is 1.2 (thats "one point two", not "twelve") after over 3 years on Firmagon then Orgovyx.

I found that most of my strength and energy came back even without testosterone. Physiotherapy exercises every morning to strengthen specific muscles, resistance exercises on the weight bench 3x/week to increase bone density and overall muscle mass, lots of walking, and "natural" exercise like snow clearing, gardening, and yard work all contributed.

That's just to say that while testosterone can help a lot, it's not the *only* path back to more strength and energy. If you end up deciding not to take the testosterone supplements, a few appointments with a good physiotherapist to set up a rehab programme for strengthening muscles that have atrophied could be life changing.

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Absolutely! I am still amazed at my ability to lift the same as before ADT - not that it was so much 😂- but I did hear horror stories about muscle wasting, swollen bellies and incredible fatigue.
But you and many others on this board pounded it into my head that you have to lift, move your ass aerobically and not slow down as much as your body wants you to.
I’ve always exercised so it was no biggie for me just to knuckle down and push just a bit more. The results have made me very happy…

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With Orgovyx, T recovery generally should be faster and higher than what you post.

Generally does not mean always, statistics and the Bell Curve...

It may be possible through diet, exercise and lifestyle changes to "live" with low T.

I've been on ADT twice, has the usual side effects, genitalia shrinkage, muscle and joint stiffness, fatigue, some weight gain around the middle, and the hot flashes

Both times I continued to go to the gym most days, lift weights, ride the indoor bike, swim. I ride my bike outdoors, 25-50 miles on some days, rode in the Garmin Unbound twice, did the Bataan Memorial March with my sister, skied with friends in Colorado, did the Ring Road in Iceland with my wife....there's more, but you get the idea.

I did take naps....

Interestingly, Mayo measured my T at the start of triplet therapy in January 2016, seven years after I completed that, my T was 600+! I have seen literature about the role exercise plays in T recovery...

So, if T is bad, why was it six years before my PCa returned? My medical team had no explanation nor could I find anything in my literature search. I'm high risk, GS8, GG4, 18 months to BCR, PSADT, PSAV...

Certainly with that type of clinical data and that rare of T recovery, it should have been sooner.

You have choices, live with what you got, see if diet, exercise and lifestyle modifications may mitigate the side effects of "low T (take the naps )..."

Or, do the T replacement therapy and see what happens.

If you choose the latter in concert with your medical team, you may need to actively monitor, say labs and consults every three months, have decision criteria about what to do if, when, PSA rises - how many consecutive increases, at what PSA will you image....

No reason to think about treatment options now since the landscape for that likely changes if, by the time, you need to decide!

Kevin

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@heavyphil

Absolutely! I am still amazed at my ability to lift the same as before ADT - not that it was so much 😂- but I did hear horror stories about muscle wasting, swollen bellies and incredible fatigue.
But you and many others on this board pounded it into my head that you have to lift, move your ass aerobically and not slow down as much as your body wants you to.
I’ve always exercised so it was no biggie for me just to knuckle down and push just a bit more. The results have made me very happy…

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Posts like yours make my day! Thanks for some heavy joy, Phil. 😊

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@kujhawk1978

With Orgovyx, T recovery generally should be faster and higher than what you post.

Generally does not mean always, statistics and the Bell Curve...

It may be possible through diet, exercise and lifestyle changes to "live" with low T.

I've been on ADT twice, has the usual side effects, genitalia shrinkage, muscle and joint stiffness, fatigue, some weight gain around the middle, and the hot flashes

Both times I continued to go to the gym most days, lift weights, ride the indoor bike, swim. I ride my bike outdoors, 25-50 miles on some days, rode in the Garmin Unbound twice, did the Bataan Memorial March with my sister, skied with friends in Colorado, did the Ring Road in Iceland with my wife....there's more, but you get the idea.

I did take naps....

Interestingly, Mayo measured my T at the start of triplet therapy in January 2016, seven years after I completed that, my T was 600+! I have seen literature about the role exercise plays in T recovery...

So, if T is bad, why was it six years before my PCa returned? My medical team had no explanation nor could I find anything in my literature search. I'm high risk, GS8, GG4, 18 months to BCR, PSADT, PSAV...

Certainly with that type of clinical data and that rare of T recovery, it should have been sooner.

You have choices, live with what you got, see if diet, exercise and lifestyle modifications may mitigate the side effects of "low T (take the naps )..."

Or, do the T replacement therapy and see what happens.

If you choose the latter in concert with your medical team, you may need to actively monitor, say labs and consults every three months, have decision criteria about what to do if, when, PSA rises - how many consecutive increases, at what PSA will you image....

No reason to think about treatment options now since the landscape for that likely changes if, by the time, you need to decide!

Kevin

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"So, if T is bad, why was it six years before my PCa returned?"

OK, let's try this.

Think of testosterone as kerosene and prostate cancer cells as little sparks. If there's a big puddle of kerosene, it won't ignite on its own, but if it touches the sparks, the fire will flare up quickly.

For six years, there weren't any sparks of prostate cancer in you, apparently, just deep, smouldering embers biding their time, so there was nothing for the T to ignite. Once one of those embers finally sparked up, it was able to fuel itself on all the testosterone you had lying around and you had to take more drastic steps to contain it.

Analogies aren't scientific explanations, and I'm not a scientist, but does that help explain things a bit (in a simplistic way)?

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@northoftheborder

"So, if T is bad, why was it six years before my PCa returned?"

OK, let's try this.

Think of testosterone as kerosene and prostate cancer cells as little sparks. If there's a big puddle of kerosene, it won't ignite on its own, but if it touches the sparks, the fire will flare up quickly.

For six years, there weren't any sparks of prostate cancer in you, apparently, just deep, smouldering embers biding their time, so there was nothing for the T to ignite. Once one of those embers finally sparked up, it was able to fuel itself on all the testosterone you had lying around and you had to take more drastic steps to contain it.

Analogies aren't scientific explanations, and I'm not a scientist, but does that help explain things a bit (in a simplistic way)?

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Well, it's a theory!

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I'm the op and here's what I don't understand about Testosterone. I know there are risks with Testosterone replacement therapy--cardiac risks, risk of pc recurrence, and others. What about Testosterone that returns naturally, maybe with diet and exercise--does that present the same risks as taking supplemental Testosterone or is the risk different with Testosterone produced naturally?

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@brownsf

I'm the op and here's what I don't understand about Testosterone. I know there are risks with Testosterone replacement therapy--cardiac risks, risk of pc recurrence, and others. What about Testosterone that returns naturally, maybe with diet and exercise--does that present the same risks as taking supplemental Testosterone or is the risk different with Testosterone produced naturally?

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Yes, it presents the same risk. If they’re still cancer in your body, it’ll raise the PSA eventually. Natural reoccurrence is probably a lot Lower number than the shot of testosterone one gets. That could cause faster Recurrence.

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@jeffmarc

Yes, it presents the same risk. If they’re still cancer in your body, it’ll raise the PSA eventually. Natural reoccurrence is probably a lot Lower number than the shot of testosterone one gets. That could cause faster Recurrence.

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This damned T question is really an enigma. We KNOW if fuels PCa, we KNOW it increases PSA, and we KNOW its absence reduces almost every biomarker associated with prostate cancer.
Yet, why don’t we get cancer in our 20’s or 30’s when T is highest? Why do most get it when their T is actually declining? How does bi-polar therapy really work on a cellular level?
Because the doctors have no answers to these simple questions (well, mine don’t - they chuckle) men will always be confused about this.
I’ve often wondered if any studies have been done on the T of cancer patients vs the T of cancer free patients. I despised organic chemistry, but I did learn that one ATOM or one extra methyl group or saturated bond will completely change the chemical properties of a molecule. Can our T change somehow and actually become the carcinogen or the initiator? My head hurts thinking about these sorts of things but all of us want to know the ‘WHY’ more than anything…

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@heavyphil

This damned T question is really an enigma. We KNOW if fuels PCa, we KNOW it increases PSA, and we KNOW its absence reduces almost every biomarker associated with prostate cancer.
Yet, why don’t we get cancer in our 20’s or 30’s when T is highest? Why do most get it when their T is actually declining? How does bi-polar therapy really work on a cellular level?
Because the doctors have no answers to these simple questions (well, mine don’t - they chuckle) men will always be confused about this.
I’ve often wondered if any studies have been done on the T of cancer patients vs the T of cancer free patients. I despised organic chemistry, but I did learn that one ATOM or one extra methyl group or saturated bond will completely change the chemical properties of a molecule. Can our T change somehow and actually become the carcinogen or the initiator? My head hurts thinking about these sorts of things but all of us want to know the ‘WHY’ more than anything…

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I think it’s more like, over time Errors occur in your DNA, As you get older, your body has a harder time correcting them. As a result, over time you end up getting prostate cancer as the DNA That has changed to prostate cancer starts to grow more of its own friends,. Now if you have BRCA Then it’s even harder for your body to correct the errors and you get it at a younger age.

I think it really does come down to that. Some people are genetically more prone to it, I know 2 guys in another group that each have two brothers and all three got prostate cancer relatively young. In my case, my father got it and so did My brother and I, and he doesn’t have BRCA2. He got it a lot older than I did, 14 years older, Because BRCA2 Accelerates the errors.

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@jeffmarc

I think it’s more like, over time Errors occur in your DNA, As you get older, your body has a harder time correcting them. As a result, over time you end up getting prostate cancer as the DNA That has changed to prostate cancer starts to grow more of its own friends,. Now if you have BRCA Then it’s even harder for your body to correct the errors and you get it at a younger age.

I think it really does come down to that. Some people are genetically more prone to it, I know 2 guys in another group that each have two brothers and all three got prostate cancer relatively young. In my case, my father got it and so did My brother and I, and he doesn’t have BRCA2. He got it a lot older than I did, 14 years older, Because BRCA2 Accelerates the errors.

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Yes, Jeff, that genetic component cannot be overlooked - it may not cause the cancer (or may?) but it sure helps it along….kind of like ‘aiding and abetting’ in legal speak.
I know of a family like yours in which the father died from PCa in his early 50’s - his first symptom was a fractured hip while running on the treadmill - his bones were riddled with it. Two son’s, seeing him die so quickly and shockingly, began PSA monitoring early and they both wound up with prostatectomies.
The youngest brother is OK for now but he knows what’s coming.

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