Testosterone Replacement Therapy after RALP

This was information provided by Rick Davis at Ancan.org. He has held online weekly meetings for Advanced prostate cancer patients (and many other groups ) for around 15 years. He has discussed this repeatedly during the meetings over the last few years.

He found this out from people that have done this and had poor results over time. Seems the drugs become less effective over time when used intermittently, compared to those who take them continuously.

This may be true, but i no longer have a prostate, my path report showed clean margins after surgery with nothing being found outside of the prostate itself, and my PSA is undetectable. Not to mention the dying question of if testosterone is a prostate cancer fertilizer, why dont more young people, who have significantly higher testosterone levels, develop prostate cancer?...

Gleason was a 3+4, nothing outside of the prostate, nothing in any of the lymph nodes, etc. PSA reached a max of 6.8 prior to surgery. Fatigue is only one of the several issues low T can cause.

Every situation is similar, however, often different. I had my prostate removed. Unfortunately, my cancer had spread into a lymph node. One out of eight samples indicated it had spread. It wasn’t what I expected! I’m glad to hear your cancer hadn’t spread into the margins. Have a great day.

If testosterone is in your system it feeds the cancer, which is in your bloodstream, and possibly in micro metastases in your body. It is true that some people can be completely cured.

Not everyone gets prostate cancer, just 12.5% of people. Most people have no inclination for prostate cancer so the testosterone level is irrelevant.

Adrenal glands also produce testosterone, and if you still have testes they continue to produce it, unless on ADT. Even on ADT some testosterone is still produced, Zytiga pretty much stops that.

I had my prostate removed and 3.5 years later my PSA started rising again. Lots of other people have it come back sooner or later than that.

You can never feel completely safe to take testosterone, that’s why you should get occasional PSA tests to make sure it’s not coming back.

Testosterone feeds prostate cancer. Many of the drugs used to fight prostate cancer are designed to reduce testosterone, including Casodex, Zitiga, Lupron, etc.). And, often, as with myself, castration is a common step in the battle. Introducing more testosterone is throwing gasoline on a smoldering, or perhaps already ragging fire. I'm 73 and have learned to deal with virtually no testosterone, but it is infinity better than advancing my cancer artificially.

I am 70, Started Casodex and Lupron over two months ago, and almost finished with 33 IMRT radiation treatments. My worst issues thus far have been hot flashes, fatigue, and my balls have shrunk (which is not a big deal for me, but surprising, I suppose.)
I am dealing with it. Not necessarily happy all the time and get frustrated at times, but concerned that side effects, especially fatigue , may get worse. The fatigue is debilitating.

One solution to the fatigue is exercise. Get out there and walk at least a couple of miles a day. If you can do some weightlifting or at least exercises that involve weights that really helps and also offsets the muscle deterioration caused by Lupron. Those two things seem to help people the most to relieve the fatigue issue.

Don’t be surprised if Lupron causes you to get a belly or a larger belly, if you can weigh yourself every day and base what you weigh on what you eat it can reduce that belly fat.

As for hot flashes, I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.

I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Can’t hurt to try it.

I got an Embr wave device which goes on your wrist and sends cold pulses through your body which really can help control the hot flashes. I used to wake up at night with the sheet, all wet under me, the all night mode of the wave device resolved that problem for me. Embrlabs.com is the website and they have a 30 day trial so you can just return it if it doesn’t work. If you hit it when you start feeling a hot flash coming on, it can really reduce the hot flash to minimal discomfort.

Well, that is the prevailing theory...have PCa, no testosterone....

I can only offer anecdotal data related to my journey.

When I came off triplet therapy in May 18 with my last 90 day Lupron shot, my T recovered to 135 by October and 400+ by February (funny, higher than when I started triplet therapy, < 300). By the time I went back on treatment in April 2023 it had climbed to 600+.

If you look at my clinical history my PCa showed evidence of recurring about a year prior to April 2023.

Still, that was a 4-1/2 year period where I had a decent T between 400-600 and yet my PCa laid "dormant."

Why, prevailing wisdom says that should not have happened. I have read various studies about intermittent versus continuous ADT, my take away is intermittent is not all that inferior to continuous.

Another question that crossed my mind is if T is bad, well, there's always some T, even when doing ADT and an ARI, so...how much T is "bad," 20, 25, 50...!?

Mine is a pretty aggressive PCa, GS8, GG4, 18 months to BCR, PSADT and PSAV...I probably should be the poster child for continuous ADT and yet, that is not the path I have chosen with the support of my medical team.

In part the decision may lie in actively monitoring with labs and consults every three months or so while off treatment and having decision criteria about what constitutes clinical data criteria to go back on treatment.

Another factor for my medical team and I is avoiding castrate resistance. How long does that take to occur while on ADT, like statistics, there is the average, mean, mode, standard deviations...who knows for each of us how long before castrate resistance sets in. I've done 18 months of Lupron and 12 months of Orgovyx. No resistance yet....

There are other factors that enter into ADT recovery, length of time on ADT, age, pre-treatment level....there are some studies which say exercise plays a role.

I will say this, life off ADT with T is a hell of a lot better, hit flashes go away, so dies the figure and muscle and joint stiffness. I never lost my libido (my wife just shakes her head...) and the genitalia shrinkage went away too.

jeffmarc says "you can never feel safe." and smc24 says it's "throwing gasoline on the fire..."

Are they wrong, no, are they right, my clinical says they are not right, albeit in my case. This is a heterogeneous not homogeneous disease. I am wary of population and historical based data.

It's your decision in concert with your medical team. Remember, you are the 51% shareholder....

If you decide yes, I would ensure I actively monitor and have decision criteria about resuming treatment.

Kevin

we both about the same, age included. I get firmagon once a month and take Abiraterone daily. Been on this for the last 18 months. Have the fatigue since the beginning. I will say I don't believe it has gotten worse over time but I sure know I have it. You just have to do the best you can to keep moving. Having it every day at times wears me down. I sometimes have to fight through it so I don't fall into that hole. I consider a good day when I keep my head on straight and have a good time, fatigue be damned. Welcome to the site, so many here that share, and I wish you the best on your journey. Best to all