Switching from Orgovyx to Bicalutamide

I'm at six months on Orgovyx and after 44 radiation treatments, with Gleason 4+3 and N1M0, iliac lymph nodes and latest PSA 0.01, testosterone 0. I'm campaigning with my oncologist to switch to a similar drug, Darolutamide, after one year. I've met a gentleman online who has used Darolutamide alone since August. Latest Testosterone 1100, PSA undetectable, former lymph node activity also undetectable. His Dr. Hugec in Minnesota has reportedly 20 patients on this monotherapy. I too have experienced every Orgovyx side effect with fatigue being the major daily issue. Exercise helps some: I had an unrelated surgery recently and without daily exercise, fatigue has been really slamming me. Darolutamide/Nubeqa seems to have lesser influence on fatigue, brain fog, and heart issues. By switching, I'm hoping to lessen side effects and prevent the cancer becoming castrate resistant.

Hi Jiime - do you have any insights on why Dr. Hugec's patient has a total testosterone of 1100 while using Darolutamide, an androgen receptor antagonist? A 1100 ng/dL level is quite high and suggests the patient is receiving testosterone replacement therapy (TRT).

I haven't heard of these two being used together. I'm thinking Darolutamide and TRT would likely oppose each other.

I’m one of Dr.Hugecs patients on darolutamide mono therapy. Too early to comment on whether it’s working because I just stopped my Lupron a few months ago and testosterone is still below 20. I would like to communicate with the person you met who has been on it since August? I’ve not been able to find anyone yet but Dr.Hugec did tell me he had others doing it.

The person you mentioned may be me. I’m 75. My urologist is Dr. Kwon of Mayo who referred me to Dr. Hujec for chemo. I was diagnosed Stage 4b metastatic Gleason 9 about 30 months ago. Started Lupron soon thereafter and added darolutamide with chemo. Subsequently did SBRT. Stopped Lupron after 13 months and am still on darolutamide mono therapy. Do PET scans every three months. My PSA is negligible. Dealing with fatigue issues. Physical therapy has helped.

I was Gleason 9, Decipher .99 and Stage 4a. Surgery + ADT (Orgovyx) + pelvic radiation. I've been on Orgovyx 29 months total, 25 months since radiation. PSA < 0.01 since radiation + Orgovvx (25 months). I've had no serious side effects from Orgovyx. Only SE so far have been joint and muscle weakness and low energy and easily tired. I've not had testosterone level checked. My Dr's are suggesting I come off ADT. I don't want to; scared that PSA will start to go up. Why mess up what seems to be working just fine?

I was Gleason 9, Decipher .99 and Stage 4a. Surgery + ADT (Orgovyx) + pelvic radiation. I've been on Orgovyx 29 months total, 25 months since radiation. PSA < 0.01 since radiation + Orgovvx (25 months). I've had no serious side effects from Orgovyx. Only SE so far have been joint and muscle weakness and low energy and easily tired. I've not had testosterone level checked. My Dr's are suggesting I come off ADT. I don't want to; scared that PSA will start to go up. Why mess up what seems to be working just fine?

I realized I didn’t answer all of your questions.

I did stop Orgovyx For eight months and was on Darolutamide Alone for that time. My PSA stayed undetectable the whole time.

The problem is that even after eight years on ADT my Testosterone started coming back quickly. Because I am BRCA2 My oncologist thought it would be best that I start back on Orgovyx when my testosterone went over 50.

Over at the advanced prostate cancer weekly meeting of Ancan.org. You will find that there are a number of people that are on Darolutamide alone. It is very effective with people that are not on ADT to suppress their testosterone.