1. < Prostate Cancer

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.

heavyphil | @heavyphil | Aug 12 3:35pm
In reply to @kujhawk1978 "It's interesting, mainstream thinking that TRT is a non-starter for someone who is coming off treatment..." + (show)
@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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Yes, the T connection is a real head scratcher. If T fuels PCa, why don’t we develop cancer in our 20’s or 30’s when it is raging?
Does our T itself somehow mutate and become a carcinogen? The actual biochemistry involved - including enzymes and host factors - is SO complicated and multi-faceted that I simply cannot follow it!
Since the T injections are of a purified, non-host derived origin and it does not seem to cause BCR , I believe that our ‘own’ T is the real culprit in this whole process.
Like you, just a layman but it does make you think..

REPLY
narus | @narus | Aug 13 4:21pm
In reply to @badnewsforme "I get Androgel using GoodRX coupon for $41.00 a month. Check it out as you might..." + (show)
@badnewsforme

I get Androgel using GoodRX coupon for $41.00 a month. Check it out as you might find it helpful.

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What I hear is the gel is the best medicine cause it gives you a regular daily dose. Although dealing with the gel seems like a hassle.
Just had a blood test and my testosterone is like 800 so time to cut back a little. But my PSA went down from .54 to .12
I stopped taking T for 2 weeks for my blood test and noticed increased bladder control issues

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narus | @narus | Aug 13 4:37pm
In reply to @michael219 "Good day all, So I am back with another Testosterone question regarding your experiences (by the..." + (show)
@michael219

Good day all,
So I am back with another Testosterone question regarding your experiences (by the way I am 69).
I was allowed to stop taking Orgovyx on August 31, 2023, as my PSA was negligible. My bloodwork on 3/28/24 shows a PSA of 0.05 and a T level of 16 (yikes).

My RO originally thought my T level would rise much higher but I was doubtful being I was on TRT for over 16 years and had a pre-diagnosis level of 770.
During my tele-visit with my RO/NP, they acknowledged the challenges of the low T (fatigue, muscle weakness and joint issues, weight gain, and zero libido. While they acknowledge some of the studies that show testosterone therapy does not negatively impact post-prostate cancer men, they are not convinced,,,,,,, yet.
I met with my urologist yesterday and he expressed some of the same concerns, He also questions that if a man's T level increases on its own, why is that ok, yet TRT is not good/safe...?

He wrote a prescription for a low-dose T shot every 10-14 days with 90-day blood tests. I am seriously considering it as my QOL has been so significantly impacted. Oh yes, the hot flashes continue, 7 months since my last ADT pill.

My question to you all is, did your T level increase after ADT, and if so, how long did it take and what did it increase from and to?
Thank you - this forum has been very helpful!!

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I had Lupron injection ($5K) and 6 months later I could barely get out of bed. Tested my T and it was at 100. I started TRT and felt much better the very next day. Later blood work at 6 months had my Testosterone come back to about low 500's

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