Can anyone share their experience with Nubeqa (darolutamide)?

I've been taking Nubeqa for 2 months. I've been a heart failure patient for years. No issues yet. Heart enzymes bloodwork a week ago came back normal.

Thank you so much for your answer! My husband starts Nubeqa tomorrow. May I ask your age when diagnosed?

Is anyone here have heart disease while taking Nubeqa?
I normally don't have problems but have had some palpitations lately. I've been exercising fairly strenuously with no problems. What side affects have others here have if you can to mention it.

Thanks

Just reading your post. I, also, had triple therapy with Taxotere/Darolutamide/Lupron for oligo metastatic disease last quarter of 2022. PSA rapidly became undetectable and has remained so with last PSA 7/22/24 < 0.014.

My Johns Hopkins MO is highly experienced. He has written/co-authored over 350 peer reviewed articles on prostate cancer and is very involved in research and trials. He discontinued my Darolutamide after 3 months and I only had 4 chemo cycles as he said there is no scientific proof that additional chemo is more effective. My Lupron/ADT was discontinued after one year.

I am a retired physician and did a lot of research before deciding on Hopkins to get my treatment. I am curious if you have any actual clinical trial data that more chemo sessions are beneficial to overall survival?

I believe that my MO believes that once the PSA becomes undetectable (and remains there for some period of time) that taking the patient off all medication is beneficial. Of course, eliminating any SEs is helpful. But I wonder if not exposing any residual micro mets to the continued use of Darolutamide (or other agent) keeps the resistant, more aggressive clones from developing.

Of course, at this time nobody really knows. I have to put my faith in an expert and follow their advice. Do you have any additional thoughts?

Good luck and prayers with you.

I was diagnosed with De nova metastatic prostate cancer June 2022. After Radiation treatments to my spin and ribs and 30 days on Casodex, I started qurterly Eligard injections and montly Zometa infusions. Along with Eligard and Zometa, I was started on Chemotheropy and Nubeqa (Darolutamide). So, I've been on Nubeqa (Darolutamide) almost 2 years. It is a miracle drug. I highly recommend that you do triplet therapy and take Nubeqa. All studies show that Nubeqa works better than all the other ARI drugs such as Enzalutamide or Apalutimide. The others are great but none has tested better than Nubeqa for Overall Survival and time to Castrate Resistance. To date, time to Castrate Resistance when taking an ADT, Nubeqa, and Docetaxel (chemotherapy) has not been reached. It has been over 5 years since the ARSENS trial ended. Nubeqa also does not break the brain blood barrier so you will not have continued fogginess or forgetfulness. I am a high end Software Developer/Architect and it does not affect me cognitively at all. The ADT (Eligard) and Nubeqa do give me terrible hot flashes. But, that is a trade-off I am willing to accept. If you are chemo healthy and you feel you can handle more than 6 chemo treatments, I recommend you do so. I did 10 treatments. But everyone is different and can handle what they can handle. The increased chemo treatments also increases Overall Survival (OS). The more micro metastases you kill up front, the better chance you kill any cancer cells with other mutations. The only treatments the doctors offer to kill the cancer is radiation and chemo. ADT and Nubeqa stop the creation of testosterone which the cancer feeds off. So, in my mind I wanted to Carpet Bomb the cancer with radiation and 10 chemo's. Had my doctor agreed, I would have done 12 cycles. But, I was able to handle it, because the Lord Almighty made it so I could. For that, I am thankful. Lastly, I will say the more chemo treatment the longer the recovery. I am just now starting to feel more energy. I do not need a nap in the afternoon anymore. My PSA is undetectable and my latest bone scan showed no evidence of cancer (rather stable metastatic disease). God Bless You. Be healed in the name of Jesus.