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Darolutamide Impact on Testosterone Utilization
Prostate Cancer | Last Active: Jul 26, 2025 | Replies (10)Comment receiving replies
@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?
Replies to "@mmacaulay, you are wondering if in addition to darolutamide blocking the use of testosterone by the..."
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.
While I'm hesitant to share with a large group, I noticed your are "director". So I assume you are associated with Mayo and having some much-desired credibility.
I've was diagnosed with Gleason 9 about three years ago with metastases in lymph nodes, including near my heart. My prostate specialist is Dr. Eugene Kwon of Mayo and my oncologist Dr. Hujec of Minnesota Oncology. I started with Lupron before doing chemo. Dr. Hujec prescribed Nubeqa when I did six sessions of chemo infusions with Dexter. Soon thereafter I did 24 sessions of SBRT at Mayo's facility in Northfield. My PSA went from 25 to less than 1.0 ng/dL and has stayed there for about two years. Meanwhile I've done bloodwork, PSMA PET scans and meetings with Dr. Kwon every three months at Mayo and more bloodwork and vists with Dr. Hujec also every three months.
So I've done Lupron and Nubeqa for 13 months followed by Nubeqa-only for another 17 months. My T has returned to about 350 and leveled off.
The reasons for this communique are about my state of chronic fatigue and development of gynecomastia. I've tried to exercise on a machine and hand weights. I've also gone to physical therapy sessions. But the fatigue continues, particularly in my legs. I have trouble with stairs. I love golf but now I have to use a cart. As related to the gynecomastia, I recently had some radiation at MN Oncology as the suggestion of Dr. Hujec. I haven't noticed any change for the better.
I'm 75 years old. I recognize that I should otherwise accept the inevitability of aging. But I'm determined that my fatigue is related to Nubeqa. Four pills a day. I keep wondering if the Nubeqa is preventing the onset of CRPC.
I'm about to do my three-monthly meetings with Drs. Kwon and Hujec. While I have tremendous respect for their abilities and knowledge, I sense I need to push back. I perceive that I might improve my quality of life for the few years I have left if I stop taking Nubeqa. Maybe a three-month or longer vacation? Or maybe at least reduce the dosage?
I'm also aware that my case is somewhat unique because blockers like Nubeqa are relatively new and certainly Nubeqa-only is ground-breaking.
Who can I turn to for independent counsel without offending the folks who have saved my life?
I' stopped Lupron after
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Yes. I am having leg weakness. Is it improper to attribute this to Lupron?