Has anyone had side effects from Nubeqa/Darolutimide?

[GeorgeGlass]

Has anyone had side effects from Nubeqa/Darolutimide? If so, what were the side effects. No side effect, responses also welcome.

[PGDuan]

i’ve been on it for about the last year. used it in addition to chemo and ADT in response to early but fast doubling time BCR. I haven’t noticed side effects, other than the normal hot flashes and fatigue which it’s hard to pin down on any single cause. However, I have noticed a bit more neuropathy in my hands lately.

[GeorgeGlass in reply to PGDuan]

Is there are recovered time of day for intake? Is it better to take with or without food?

[PGDuan in reply to GeorgeGlass]

I’ve always been told to take with food. 2 pills twice a day. I go with at breakfast and then at dinner.

[Heykm01]

I’ve been taking it since Aug. As is the case with probably most of the group, am taking it with Lupron - so it’s hard to distinguish what SE’s are attributable just to Nubeqa.

Hot flashes, some fatigue (in my case not much - exercise, exercise, exercise). I’ve also had high liver enzymes which my oncologist attributes to the Nubeqa

My recollection on a prior post is that taking with food doubles the bioavailability. So yes with food.

[GeorgeGlass in reply to Heykm01]

Did your neutrophiles or white blood cells drop, from using it?

[Heykm01 in reply to GeorgeGlass]

They have bounced around a bit but last results weren't much different than pre-nubeqa

[GeorgeGlass in reply to Heykm01]

ok good. No neutropenia. Good to hear

[GeorgeGlass in reply to Heykm01]

Which liver enzymes are high? How high? What did you do, to lower those numbers?

[TwilightZone]

I am 72 y/o, been on NUBEQA for seven months. I have no problems to report and hope it stays that way!

[GeorgeGlass in reply to TwilightZone]

good to hear something good happening in the twilight zone

[AlvinSD]

I’ve been on it since about June 2022 and have had no issues. I was on Zytega which elevated my systolic BP about 15 points above my normal baseline BP. After switching to darolutamide, I noticed my BP has returned to my pre-Zytega baseline after about a week.

[GeorgeGlass in reply to AlvinSD]

Did your neutrophiles or white blood cells drop, from using it?

[AlvinSD in reply to GeorgeGlass]

No. now that I’m through chemo and radiation my WBC, Neutrophils and platelets have all returned to my normal baseline.

[GeorgeGlass in reply to AlvinSD]

Good to hear alvin

[Skifanatic]

I’ve been on Nubeqa since December 1 (along with Lupron and Docetaxel/Carboplatin treatments). No side effects that I can tell. I was able to get first 30-day-free offer, and since then have been supplied my monthly prescription free through Bayer’s foundation (have to meet requirement of 500% of federal poverty rate, or household income of about $90,000/year or less).

[wagscure259]

I was on it for nearly two years without only additional sweating throughout the day and night. Taken with food increases absorption 2-2 1/2 times. I tried to space it out twelve hours, at breakfast 8 am and some food at 8 pm to get full 24 hour coverage. I asked the Bayer pharmacist does it matter what type of food or how much and he thought breakfast and dinner would suffice.

[GeorgeGlass in reply to wagscure259]

good info, I normally eat everything within an eight-hour period. Looks like it will have to change to a 12 hour window.

[GeorgeGlass in reply to GeorgeGlass]

do you still take any other supplements with it? If it lowers my neutrophils or WBC, then taking iron, folate etc, should help, right?

[wagscure259 in reply to GeorgeGlass]

Probably not. Iron is utilized for iron deficient anemia or other diagnoses, , folate for that deficiency and other issues. I only take “supplements” to correct abnormal blood work under prescription of my MO or PCP. Just describing my perspective and actions, not prescribing for anyone else. These issues, abnormal blood work and deficiencies are far more complex while undergoing treatment than they appear. Best to you brother

[GeorgeGlass in reply to wagscure259]

thanks, same to you Wags

[Okay4now]

I've been taking Nubeqa for about 9 months. Absolutely no side effects (although the usual front effects from Lupron). And it's the first time in 20 years that my psa has been <0.1 !

[GeorgeGlass in reply to Okay4now]

Good news. By the way, I'm retired Army but I probably got my cancer from different toxins while serving. Sorry about the Agent Orange. I'm glad to see the slow rise you have had over the years though. Mine grows much faster, thanks to a poor medical treatment.

[God_Loves_Me in reply to Okay4now]

Okay4now Have you use other medicine that did not work and move to Nubeqa ?

[Okay4now in reply to God_Loves_Me]

The short answer is no, only Lupron for all those years. I told my urologist about some pain in my hip, and he set me up for a psma pet scan. The scan showed cancer cells in the prostate bed, but No Distant Metastases ! I was prescribed Nubeqa because it treats non-metastatic disease. My psa has been undetectable (<0.1) for the last 18 months or so. And no side effects !

[GeorgeGlass in reply to Okay4now]

Good to hear 👍🏻✝️

[No17]

Hi Unfortunately I am in the minority of Nubeqa side effects. Already one Eligard for 3 years, I started Nubeqa a year ago.

At the recommended dose(with food)4x 300 MG per day, my blood pressure went thru the roof after a couple of months.

I dropped to 3 a day ( one in the morning, 2 in the evening) for 4 months.

But experienced rashes , head aches, dizziness and insomnia with accompanying depressive state of mind

My Onco dropped me further to 2 a day ,the minimal dose. It is not without adverse effects but more manageable. PSA dropped from 2,95 to 0,06 rapidly at first, but has creeped up to 0,34 since I cut down on dosage.

I am 64 and exercise a lot (weights and hockey).

I know Nubeqa pushes back significantly the outset of metastasis. So I hang in there.

Thanks

[GeorgeGlass in reply to No17]

thanks for the details. I stopped playing hockey right after my cancer and heart diagnosis. I was kicking ass in a league where the Washington Caps practice. I think the cancer and CAD are related. The angina came on out of nowhere. Long story.

Sorry to hear about your side effects. Those sound bad

Have you discussed trying Zytiga or Xtandi instead?

[No17]

No. My understanding is the side effects of those could be worse and might include neurological glitches.For now with my oncologist supervision, I am still giving Nubeqa a try at lower dose.

Glad to hear from a fellow ice warrior

Take care

[GeorgeGlass in reply to No17]

17, I'm on my first full day of 4 pills. I tried 2 pills for the first three days. How long did it take before you started having bad side effects? Did the high blood pressure, rashes, headaches, dizziness, insomnia and depressive state of mind all come on after about two months-in?

George

[No17 in reply to GeorgeGlass]

HiWhen I initially started with 4 pills a day, the side effects came in after 2 or 3 weeks. Later on as I progressively dropped dosage, side effects took 6 to 8 weeks to reappear.

Good luck. Wishing you only the best

[GeorgeGlass in reply to No17]

I'm having moderate side-effects today. I started on 4 pills per day, about 8 days ago. I'm what about the side effects from Nubeqa? I have the fatigue and small rash, mild body and headaches. Not dizziness but my head feels a little unusual, and my eyes and sinuses feel aggravated some. Lack of concentration etc.

Is it possible that you and I are having problems because we are athletic and have low bodyfat content? Maybe the dosages are not calibrated for how much bodyfat someone has?

[Joeym1040]

Been on Lupron since 2011. Started Nubequa and used for about 8 months. PSA was starting to go up and i went into the SPLASH trial where they took me off the Nubequa and wanted me only on Lupron and their radiation pharmaceutical. I had NO additional side affects while on Nubequa.

[GeorgeGlass in reply to Joeym1040]

OK, best of luck and prayers that the SPLASH trial will work well for you Joey.

[Joeym1040]

And all the best to you!