Post therapy Testosterone

Posted by michael219 @michael219, Dec 9, 2023

I would be interested to hear about anyone’s experience concerning Testosterone therapy after Proton radiation and hormone pills. Earlier this year (2023) I had 29 Proton treatments followed by Orgovyx pills (stopped the pills at the end of August & still feeling the effects to some degree).

Before my Prostate cancer diagnosis, I was on Testosterone therapy injections for over a decade due to low levels. My T blood level was 770 (range approx. 350 – 850) at the time of my diagnosis when I immediately stopped the injections. My T level dropped to 55 within a month and as of the other day, it is now 16, with a PSA of 0.03.

Due to the low T levels, I am experiencing a significant lack of energy, muscle, and joint discomfort, extremely low libido, and more.
My Radiation Oncologist has advised against any TRT for 2+ years which appears to be the norm in the USA. There are studies out of Europe that appear to disagree with how PC is treated in the USA, even saying that TRT might be helpful.

I continue to push through this and play Pickleball 4-5 times a week with the hope my T levels will naturally increase but from the end of August, my level has gone from < 12 to only 16.

So, my question is has anyone on here seen/experienced any of the above, or heard anything different about TRT (Testosterone Replacement Therapy) after treatment has been completed?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

It's interesting, mainstream thinking that TRT is a non-starter for someone who is coming off treatment yet if it returns gradually and naturally, that's "ok." That's my perception 10 years into this journey. That thinking is used to advise men to stay on ADT permanently or at least until you become castrate resistant then...

You can search for intermittent versus continuous ADT, you'll find a variety of clinical data, yes or no. Overall I think that data says there may be some slight difference in overall survival. There is also data about the time off shortening with each vacation.

I'm a layman like everyone else so take my thoughts in that context. Here's my clinical history...note that my T began to return in Oct 18 (135) which would have been three months after the last 90 day Lupron shot "wore off."

By February 2019 it was 400+ and finally in April 2023, 600+. Yet from that time in October 17 to roughly the end of December 2022, my PCa stayed "quiet." Why, if T is the fuel then somewhere between Oct 17 and Feb 19 it should have reared its ugly head.

I am a study of one, no way to clone myself and see how other treatments turned out, just the results of the one I chose.

So, in MY case, T recovered naturally with no affect on PCa until almost 4-1/2 years. Would it have been different with TRT, I don't know!

If your decision in conjunction with your medical team is TRT, then active monitoring, labs and consults every three months or so to check PSA and T should be strongly considered. That may give you the clinical data to determine if and when your PCa rears its ugly head and then you have decisions to make.

Kevin

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If you were on TRT that long you might have not needed the pills. My radiation oncologist wanted to jab me the day we met with Lupron and do 28 treatments of Proton. I had been on TRT since 2008 with Androgel and my endocrinologist had tested with me off the TRT for a month and my T level crashed to castrate. I told the oncologist this, but he did not believe me which pissed me off as I am very familiar with all my bloodwork as I have an Excel Spreadsheet from 2008 with every reading. The hospital claims in their literature they treat every patient as an individual. LOL. So he tests me and guess what? 12 mg/dl which is lower than the Lupron shot promises. I tested two more times during the time I was off TRT and those two were also 12 ng/dl. The urologist who is going to prescribe my T tested my pituitary hormones and it was sending signals but the boys after all that time were not answering the call to duty. I gave the oncologist 8 months of self-castration and went back on two months ago and I feel much better for being 74. I also did the 5 Proton treatments rather than his 28. That happened when I told him I was going to do 5 CyberKnife treatments and all of a sudden, he goes "we can do 5". Guess who a coauthor of a study with a 6month Lupron shot and 28 proton radiation treatments and your first guess does not count. I too have read that having a low testosterone level after radiation increases your chances of Biochemical Reoccurrence. I have also seen studies that for someone over 70 it makes no difference in results weather you have the Lipron shot or not.

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@kujhawk1978

It's interesting, mainstream thinking that TRT is a non-starter for someone who is coming off treatment yet if it returns gradually and naturally, that's "ok." That's my perception 10 years into this journey. That thinking is used to advise men to stay on ADT permanently or at least until you become castrate resistant then...

You can search for intermittent versus continuous ADT, you'll find a variety of clinical data, yes or no. Overall I think that data says there may be some slight difference in overall survival. There is also data about the time off shortening with each vacation.

I'm a layman like everyone else so take my thoughts in that context. Here's my clinical history...note that my T began to return in Oct 18 (135) which would have been three months after the last 90 day Lupron shot "wore off."

By February 2019 it was 400+ and finally in April 2023, 600+. Yet from that time in October 17 to roughly the end of December 2022, my PCa stayed "quiet." Why, if T is the fuel then somewhere between Oct 17 and Feb 19 it should have reared its ugly head.

I am a study of one, no way to clone myself and see how other treatments turned out, just the results of the one I chose.

So, in MY case, T recovered naturally with no affect on PCa until almost 4-1/2 years. Would it have been different with TRT, I don't know!

If your decision in conjunction with your medical team is TRT, then active monitoring, labs and consults every three months or so to check PSA and T should be strongly considered. That may give you the clinical data to determine if and when your PCa rears its ugly head and then you have decisions to make.

Kevin

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You don't mention your age.

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@mikewo

You don't mention your age.

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67, turn 68 in February 2025.
Mat the time of beginning triplet therapy I was just shy of 62, when I finished, about 63-1-2

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@kujhawk1978

67, turn 68 in February 2025.
Mat the time of beginning triplet therapy I was just shy of 62, when I finished, about 63-1-2

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Turn 68 in February 2024...

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@kujhawk1978

Turn 68 in February 2024...

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I found out at 73 and am now 74. Big differences in choices at 73 compared to 62. Even though I am in good shape for my age I don't expect to live forever.

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While I had surgery for my cancer I would like to share my experience with TRT. I experienced fatigue for years prior to my surgery. I had low B-12 which requires monthly injections. Extremely helpful but I still had some fatigue after surgery. Went to my wife's Internist who diagnosed my low T. Like the original poster, I was told I need to have undetectable PSA for two years after surgery before I can have TRT. I'm one of those people who has to know "why" whenever I'm told something. I read many studies that support TRT does not cause BCR. Went back to my Urologist who agreed and prescribed me daily T injections. They became too intense for me so I went to an Endocrinologist for further testing. He also agreed TRT does not cause BCR. He put me on Androgel which works great for me. I believe many Doctors stick with what they were taught years ago and aren't informed with newer studies. My post-operative biopsy showed high risk for BCR with EPE+ and SM+. I am very comfortable taking TRT and my PSA remains undetectable three years after surgery.

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@mikewo

You don't mention your age.

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As for me, I am 68, turing 69 in a few months.

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@michael219

As for me, I am 68, turing 69 in a few months.

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Been having a thought about this. 5 decades ago my phd candidate grad asst. leaked some off the record research he was doing. He was making synthetic thc in the lab. To his disappointment it was the wrong isomer and had no buzz. My thought here is that synthetic testosterone might be similar, no feed for pc but good for body. Anyone read anything along these lines?

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@mikewo

If you were on TRT that long you might have not needed the pills. My radiation oncologist wanted to jab me the day we met with Lupron and do 28 treatments of Proton. I had been on TRT since 2008 with Androgel and my endocrinologist had tested with me off the TRT for a month and my T level crashed to castrate. I told the oncologist this, but he did not believe me which pissed me off as I am very familiar with all my bloodwork as I have an Excel Spreadsheet from 2008 with every reading. The hospital claims in their literature they treat every patient as an individual. LOL. So he tests me and guess what? 12 mg/dl which is lower than the Lupron shot promises. I tested two more times during the time I was off TRT and those two were also 12 ng/dl. The urologist who is going to prescribe my T tested my pituitary hormones and it was sending signals but the boys after all that time were not answering the call to duty. I gave the oncologist 8 months of self-castration and went back on two months ago and I feel much better for being 74. I also did the 5 Proton treatments rather than his 28. That happened when I told him I was going to do 5 CyberKnife treatments and all of a sudden, he goes "we can do 5". Guess who a coauthor of a study with a 6month Lupron shot and 28 proton radiation treatments and your first guess does not count. I too have read that having a low testosterone level after radiation increases your chances of Biochemical Reoccurrence. I have also seen studies that for someone over 70 it makes no difference in results weather you have the Lipron shot or not.

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Can you share those studies that if one is over 70, the Lupron shot doesn't make a difference?
Thanks.

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