Can anyone share their experience with Nubeqa (darolutamide)?

Posted by markagottlieb @markagottlieb, Apr 23, 2024

my husband will start Ubeqa this week. I would like to know others experiences.

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kuz | @kuz | Jul 19 6:51pm

In reply to @jaltorfer "experience in Darolutamide used for treating your Prostate cancer" + (show)

Has anyone been on Darolutimide only without ADT and has it controlled the PSA?
thanks

northoftheborder | @northoftheborder | Jul 19 8:15am

In reply to @jaltorfer "experience in Darolutamide used for treating your Prostate cancer" + (show)

All of the -lutamides (2nd gen ARSIs) are

1. Expensive (especially in the U.S.).

2. Lower in side-effects than Abiraterone/Zytiga (1st gen ARSI), since they don't require you to take a steroid with them.

3. Surprisingly effective, especially when initiated right at the start of treatment for advanced prostate cancer, without waiting for castrate-resistance.

mjp0512 | @mjp0512 | Jul 19 5:19am

In reply to @jaltorfer "experience in Darolutamide used for treating your Prostate cancer" + (show)

Yep,,,4 pills a day.

keno2087 | @keno2087 | Jul 18 11:45pm

In reply to @jaltorfer "experience in Darolutamide used for treating your Prostate cancer" + (show)

My father's PSA while on Eligard and Nubeqa went down quickly (granted he had SBRT while starting treatment at the same time). His PSA was 0.5 during the oligorecurrence and went below 0.1 within 2 months. It stayed that way for another 16 months before starting a treatment holiday. He did find he had impaired relaxation pattern on his last echocardiogram but he hasn't been in great shape for a while either (he's finally working on that now). The only change I think I'd make if and when he starts treatment again is to swap out Eligard with Orgovyx. The other ARSIs seem to have even worse cardiovascular side effects compared to Nubeqa from what I've read.

Jeff Marchi | @jeffmarc | Jul 18 9:47pm

In reply to @jaltorfer "experience in Darolutamide used for treating your Prostate cancer" + (show)

Not sure what you’re asking. I’ve been on Darolutamide for three years and it works great. I know dozens of people on it, and almost all of them are pleased with the result. It has the least side effects of any of the ARPI drugs. Occasionally, someone will have a side effect, but that is not the norm.

jaltorfer | @jaltorfer | Jul 18 6:43pm

experience in Darolutamide used for treating your Prostate cancer

asolidrock | @asolidrock | Aug 14, 2025

In reply to @denkea "May I ask how your bone metastasis was diagnosed???" + (show)

A PET scan which show everything.

asolidrock | @asolidrock | Aug 14, 2025

In reply to @wooldridgec "I was diagnosed with De nova metastatic prostate cancer June 2022. After Radiation treatments to my..." + (show)

@wooldridgec

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.

Jump to this post

I just got to see an oncologist after 2 months with urologist who put on nuveqa and shot every 3 months. Jeffmarc kept telling me to seen an oncologist and thank the Lord I did. He was very helpful; if insurance approved I'll start chemo soon and every 3 weeks. Also gonna have a bone scan along with genetic testing. I'll have a PET scan every 3 months to show the progress; thank you Jeffmarc and many others that supported me. As always God gets all the praise and Glory. It's amazing how He uses people to help us because of His great love for us; thank you Jesus.

denkea | @denkea | Aug 14, 2025

In reply to @wooldridgec "I have been on Nubeqa for about 3 years plus ADT. I'm denovo stage 4 metastatic..." + (show)

May I ask how your bone metastasis was diagnosed???

wooldridgec | @wooldridgec | Aug 14, 2025

I have been on Nubeqa for about 3 years plus ADT. I'm denovo stage 4 metastatic to the bone only. PSA is undetectable. Just had a PSMA-PET on 10/6/2028. Results - "No evidence of regional or distant metastases with PSMA uptake." All bone metastases have no abnormal PSMA uptake. Nothing in the lymph or organs.

Had a bone scan on 06/04/2025. Results "Interval Improvement - Decreasing tracer activity in areas of known bone metastasis with no evidence of disease progression."

Nubeqa does not cross the blood brain barrier - so no brain fog. ADT + Nubeqa does however produce hot flashes. Some are just terrible.

Everyone is different, but I think Nubeqa continues to test out better than the other ARSIs with regard to Overall Survival, time to castrate resistance, and time to pain. By the way, the ARASENS trail still data still lists time to castrate resistance as Not Reached (NR).

Do not let any doctor tells how long one can live with this disease. They do not know. Everyone is different. Every cancer in each of us is different. Everyone's ability to handle treatment and how much are different.

I chose to carpet bomb the cancer upfront. Radiation to the spin (10 cycles) and ribs (5 cycles) first to shrink the metastases, Casodex for a month, ADT and Nubeqa, Xgeva, and 10 cycles of chemotherapy. I would have done 2 more cycles if my doctor would allow it.