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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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natem | @natem | 14 hours ago
In reply to @retireddoc "Just reading your post. I, also, had triple therapy with Taxotere/Darolutamide/Lupron for oligo metastatic disease last..." + (show)
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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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@retireddoc Who was your MO at JHH? I go there presently. Thank you, Nate

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troe425 | @troe425 | 15 hours ago
In reply to @tcopel "i am on Nubeqa and Orgovyx ( and proton radiation) at the moment. I have the..." + (show)
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i am on Nubeqa and Orgovyx ( and proton radiation) at the moment.
I have the nuisance hot flashes and some fatigue which i push through.
Over all, I’m doing ok with the meds.

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@tcopel my Dad is on both of the meds you are on. He is 86 and has Stage 4. His last PSA was 39 and what prompted this journey. His Urologist scheduled his next labs for mid Sept and this will let us know if Orgovyx and Nubeqa are working. My Dad seems to tolerate the meds well. His only symptom is having to go pee a lot more often than he is used to going.

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sillyoyster | @sillyoyster | 1 day ago
In reply to @lsk1000 "@sillyoyster Are you taking just Nubeqa, no ADT?" + (show)
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@sillyoyster Are you taking just Nubeqa, no ADT?

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@lsk1000 no adt. I am on Pluvicto now. One more treatment to go.

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papamark | @papamark | 1 day ago
In reply to @colleenyoung "@papamark, that's great news. Did you have any other treatment in addition to Nubeqa (darolutamide)?" + (show)
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@papamark, that's great news. Did you have any other treatment in addition to Nubeqa (darolutamide)?

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@colleenyoung trelstar injection every 6 months. Prolia every 6 months for bone integrity. I dont leave home without my Nubeqa.

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lsk1000 | @lsk1000 | 1 day ago
In reply to @papamark "It works. Psa last August was 25. It is now undetectable!" + (show)
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It works. Psa last August was 25. It is now undetectable!

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@papamark Well done. Are you taking just Nubeqa or in combination with an ADT? I’m thinking about dropping my ADT and taking just Nubeqa.

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lsk1000 | @lsk1000 | 1 day ago
In reply to @sillyoyster "I've been on it for two months. No side effects and psa continues to drop." + (show)
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I've been on it for two months. No side effects and psa continues to drop.

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@sillyoyster Are you taking just Nubeqa, no ADT?

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1 reply
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rkidney27 | @rkidney27 | 1 day ago
In reply to @colleenyoung "@papamark, that's great news. Did you have any other treatment in addition to Nubeqa (darolutamide)?" + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@papamark, that's great news. Did you have any other treatment in addition to Nubeqa (darolutamide)?

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@colleenyoung
Hey Mrs Colleen, I have been through the ringer. I have had radiation 3x, chemo(Docetaxil), prostatectomy, extended pelvic dissection, Hilar lymphnodes removed, AU Sphincter, the full monty!

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wooldridgec | @wooldridgec | 2 days ago

I've been on Eligrad ADT 3 month injections and Nubeqa 600mg daily for almost 4 years. I work as a senior software engineer and Nubeqa does not cross the blood brain barrier and cause me brain fog. I do get fatigue and hot flashes but I just accept those side effects as my new normal.

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Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @papamark "It works. Psa last August was 25. It is now undetectable!" + (show)
Profile picture for papamark @papamark

It works. Psa last August was 25. It is now undetectable!

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@papamark, that's great news. Did you have any other treatment in addition to Nubeqa (darolutamide)?

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2 replies
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rkidney27 | @rkidney27 | Jul 26 11:47am
In reply to @cencalwife "Hello, Nubeqa alone, has not worked for my spouse. He stopped Orgovyx due to causing high..." + (show)
Profile picture for cencalwife @cencalwife

Hello,

Nubeqa alone, has not worked for my spouse. He stopped Orgovyx due to causing high bp and heart issues. His breasts are very sore, sometimes even clothing rubbing against skin is bothersome and his energy levels are low, but that has been with Orgovyx and Lupron as well. He's 59, diagnosed with mets at 51.

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@cencalwife I was lucky to have treatment by a European GU Oncologist who performed a extended pelvic direction. During that procedure, he advised me that a short, single course of radiation would prevent some of the issues with male breast tissue, mainly being painful growths. It worked, and I have a friend back here in the states who did not have the single dose of radiation and they did surgery to remove painful growths. Just some thoughts from my experiences, I was diagnosed at 49, I am on Nubeqa and I have the usual hormonal issues, weight gain, I get emotional and the hot flashes, oh yeah, fun times!

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