Darolutamide Impact on Testosterone Utilization

Posted by mmacaulay @mmacaulay, Jul 5 6:15pm

I did 13 months of ADT (Lupron injections) with darolutamide (Nubeqa) while doing chemo then radiation. Now I’m on darolutamide only. While my testosterone is increasing, I’m slow to regain strength, especially in my legs. My understanding is darolutamide is a testosterone blocker. So I’m curious about it blocking testosterone utilization other than by cancer cells as related to my ongoing weakness.

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Colleen Young, Connect Director | @colleenyoung | Jul 10 8:09pm

@mmacaulay, you are wondering if in addition to darolutamide blocking the use of testosterone by the tumor cells, it may also be blocking uptake of testosterone in healthy cells and thereby causing general weakness. Am I understanding your question correctly?

I see others like @kam23 @sam60 @john6stodolka @digby2023 @lorenbk @ssaftler @hergiew and more have written about leg weakness related to Lupron in these discussions:

- Lupron Depot: Weakness and instability side effects
https://connect.mayoclinic.org/discussion/lupron-depot/
- Lupron: Anyone have muscle weakness and severe leg pain?
https://connect.mayoclinic.org/discussion/lupron-muscle-weakness-and-severe-leg-pain/
For some the weakness resolved over time. @mmacaulay, How long has it been since you stopped treatment with chemo and Lupron? How long have you been on darolutamide?

kam23 | @kam23 | Jul 10 9:31pm

In reply to @colleenyoung "@mmacaulay, you are wondering if in addition to darolutamide blocking the use of testosterone by the..." + (show)

Yes. I am having leg weakness. Is it improper to attribute this to Lupron?

cfhny | @cfhny | Jul 11 8:05am

It is my understanding that all the lutamide drugs block all the body's cells uptake of 'T' (testosterone), not just the PCa cells. Thus, even if you return to 'T' production after removal of other ADT drugs, the lutamides will not allow your body to use it as all the body's cell receptors are blocked from uptake of the replenished 'T'.

Again, this is my understanding of the lutamides. Please feel free to add to or correct me if needed.
Charlie

mmacaulay | @mmacaulay | Jul 11 7:52pm

Thanks! I was wondering why nobody commented. Your understanding reinforces my suspicion that darolutamide is the reason why I remain weak even though my T is trending back up since I stopped Lupron. I especially have difficulty with stairs.

mmacaulay | @mmacaulay | Jul 11 8:03pm

In reply to @colleenyoung "@mmacaulay, you are wondering if in addition to darolutamide blocking the use of testosterone by the..." + (show)

I‘ve been off Lupron injections since March 1, after 13 months of once-per-month sticks. I started the injections shortly before doing six sessions of chemo (toxotere). Started darolutamide pills when I started chemo and am still doing the pills now for about sixteen months.

Glass is half full. Shouldn’t complain.

round5 | @round5 | Jul 12 8:36am

I’ve never heard of anybody doing the Nubeqa without the standard ADT(such as Lupron). I’m on both after completing chemotherapy and Pluvicto. It is my understanding I’ll be going off the Nubeqa within the next year and continue on the Lupron.