Lupron/enzalutamide side effects so severe after 36 wks. getting off

Ask your doctor to put you on Nubeqa (Darolutamide). It has very few side effects, does not cause fatigue for almost anybody and doesn’t pass the blood brain barrier so it doesn’t cause brain fog.

I’ve been on it for almost 3 years and it’s worked great. I know at least a dozen other people that have been on it many on it as their only drug. Most of these people with it as their only drug are in their late 70’s and 80s.

It Suppresses testosterone so that it works really well, even if you have testosterone.

@jeffmarc
Yeah I wanted to go that way but BCCA (BC Cancer) does not cover it and I am self pay . Getting some testosterone back for a little strength will also be very welcome.
Regards

@johnici
I thought other people in this forum have said that other provinces in Canada do Have Nubeqa available. Is it possible they are working on getting it available in BC?

Yes, similar case to my friend, just local PC no mets, but after radiation they put him on ADT scheduled for 18 months, but he's been having really low energy then muscle/joint pain to the point of painkillers, his PSA has been "zero" (that's what he tells me) since he began, he's a year or two older than you. If it was me I'd try suspending it for a while and watch the PSA.

He says the muscle/joint pain is getting better, perhaps it came from another source, who can tell.

But he's still just being a tough guy and trying to get to the scheduled 18 months.

Same here with ADT(Eligard), EVEN 18 months after finishing! Achy, some flashes or extreme tingling
throughout the body, endless peeing, big time weight gain, fatigue, just many days feeling weird! Not much dizziness, or loss of appetite!
Good luck to you.

I've only been on ADT (Orgovyx) for a month and a half.

Ever since my RO sentenced me to 2 years of ADT I've wondered what I would do if my side effects became so severe I would want to stop.

When I discussed my current side effects with the doc who is supervising my ADT, he mentioned that the talk around the PCa department at his cancer center lately is the use of estrogen as an alternate ADT treatment. I was a bit astonished.

Here are some excerpts from "Transdermal Estrogen May Offer Another Option for ADT in Men With Metastatic Prostate Cancer" an article published this year in the ASCO Post https://dailynews.ascopubs.org/do/transdermal-estrogen-may-offer-another-option-adt-men-metastatic-prostate-cancer

“Estradiol patches may be a viable option for providing ADT to men with metastatic prostate cancer who are taking androgen receptor pathway inhibitors, according to new research being presented at the 2025 ASCO Genitourinary Cancers Symposium.

The findings, from a phase 2 study within the multiarm STAMPEDE trial, show that transdermal estradiol can achieve similar prostate-specific antigen responses as LHRHa in patients with metastatic disease, while limiting side effects.

Hot flashes and fatigue are among the most bothersome to patients, said lead author Nick James, PhD, MBBS, of the Institute of Cancer Research, The Royal Marsden NHS Foundation Trust, in London. In addition, he said, there is bone density loss that increases the risk of fragility fractures—particularly as a growing number of men with metastatic prostate cancer survive for years.

Transdermal estradiol, like that used for menopausal hormone therapy, is a potentially attractive alternative approach to ADT for a number of reasons, Dr. James said. It suppresses testosterone without estrogen depletion; it increases, rather than decreases, bone density; it’s inexpensive; and it avoids the blood clot risk associated with oral estrogen.....

...Estradiol patches could be particularly attractive to patients who are on an LHRHa and troubled by side effects like hot flashes, Dr. James said. But they also have appeal from a cost standpoint, he added, whether for health systems or, in places like the United States, for patients who lack insurance or are underinsured.

This sort of repurposing of an older, cheap drug, Dr. James said, is an important way to improve outcomes, separate from developing new drugs.”

@climateguy
There are two videos on the ancan.org Website by Richard Wassersug PhD About using estradiol. He’s been using it for over a decade and it works great for him. He doesn’t use the patches he uses the gel, I know another person that uses the injections.

The patch study done in England discusses this issue in quite a bit of detail. They’ve been slow to come out with their final report because they’ve been busy working on combining it with other drugs and doing Clinical trials of combinations.

Using estradiol can be Just as effective as using ADT. If you have BRCA2 you cannot do it.

@jeffmarc In one of the videos Wassersug explains the reason the necessary studies are not being done that would bring estradiol therapy out of the shadows for Americans is that drug companies can't patent a naturally occuring hormone such as estradiol. So if one company finances a study that would tend to force estradiol into the NCCN guidelines as a first line alternate treatment, they wouldn't benefit financially so they don't do it. But, because estradiol patches and gels are an approved therapy for women, doctors can prescribe them off label.

The alternative use of using estradiol sounds very good.

My partner and I just recently last week met with MO for the first time post RP. She advised and prescribed for him to start ADT and we have an appointment with RO for RT to come.

I already have a message to her requesting the alternative ADT medicine mentioned on this site, Darolutamide and have yet to hear back but now I am wanting to reach out to her to ask about estradiol patches instead of ADT. He’s being seen at the City of Hope and I wonder how she’ll respond to me asking something like this.

I am waiting to hear what she’ll even say about changing the Zytiga to Darolutamide. She maybe annoyed.