Can anyone share their experience with Nubeqa?

Posted by markagottlieb @markagottlieb, Apr 23, 2024

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

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for retireddoc @retireddoc

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.

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Carducci?

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In reply to @wooldridgec "Carducci?" + (show)
Profile picture for wooldridgec @wooldridgec

Ken Pienta

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Profile picture for retireddoc @retireddoc

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.

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Who was/is your doc at Johns Hopkins?

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Ken Pienta is the MO and his NP is Diane Reyes who does most of the heavy lifting and is very knowledgeable about prostate cancer and its treatment.

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I've been on it for two months. No side effects and psa continues to drop.

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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

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My husband started it exactly a month ago. He says he feels fine. He has had a few hot flashes but none are terrible…he calls them warm flashes. He had the 6 month Lutron a week before he started Nubeqa. His PSA went from over 400 to 70 the first 3 weeks. He was diagnosed with advanced prostate cancer with many bone metastasis on his pet scan. His psa test in 2023 was normal. In 2024 he missed the psa. In early 2025 it was over 400. We were blindsided. We are very optimistic. He is 73. Good luck and keep the faith💕

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Profile picture for asolidrock @asolidrock

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

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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.

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Profile picture for markagottlieb @markagottlieb

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

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I was diagnosed on my Birthday in the hospital. I turned 60 years old.

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Profile picture for mjp0512 @mjp0512

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.

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Thank you so much for your response. I've only been on Nubeqa for about 2 months. Haven't had heart enzymes checked; guess I need to ask my cardiologist about that.
Thanks again hope you have a good day

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