Darolutamide 1200mg/day?: Lately my MO... - Advanced Prostate...

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Darolutamide 1200mg/day?

ARIES29 profile image
27 Replies

Lately my MO has put me on 1200mg a day of Nubeqa or Darolutamide with 3 monthly Zoladex injection. My PSA was 6.4 & was reduced to 2.4 in 5 weeks. So that is good, but my question is, has anyone here been on that amount of Darolutamide a day? & What is it doing to the heart? not to mention liver & kidneys. My suspicions were raised because now they subject me to blood pressure tests.

I appreciate any advice please.

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27 Replies
Tall_Allen profile image
Tall_Allen

600 mg twice a day(=1200 mg/day) is the standard Nubeqa dose.

ARIES29 profile image
ARIES29 in reply toTall_Allen

Thanks T_A, I value your reply.

MarylandGuy profile image
MarylandGuy

As TA said, that is the standard dose. I took it with Lupron and my PSA went from 200 to near zero. It lasted nine months then stopped working and I am now on a pARP inhibitor.

I had very few side effects , it did not impact my liver or kidney functions and I see cardiologist often no additional issues there.

I consider nubeqa a lifesaver, just wish it worked longer for me.

ARIES29 profile image
ARIES29 in reply toMarylandGuy

Thanks MarylandGuy, I have renewed confidence now & we all wait for the day these drugs stop working.

tarzantass profile image
tarzantass in reply toMarylandGuy

Hi! I thought olaparib (Lynparza) is used when there are DNA mutations. Can I still use olaparib without any DNA mutations (BRCA 1 and 2)? If yes, is it effective?

Thanks.

MarylandGuy profile image
MarylandGuy in reply totarzantass

I am not a doctor but lynparza is mostly used on people with the dna mutations. I have brca2. It is working for me but with more side effects than something like nubeqa. My hemoglobin is going down slowly

swwags profile image
swwags

My onc added 1 baby aspirin per day to my regimen

ARIES29 profile image
ARIES29 in reply toswwags

Thats interesting, to thin the blood?

swwags profile image
swwags in reply toARIES29

yes

Brad70 profile image
Brad70

Taking the same dose of Nubeqa for 9 months now. Works great (PSA undectable) and no side effects.

Cody2362 profile image
Cody2362 in reply toBrad70

yeh, it's amazing considering the lack of side effects ... I'm shocked at how effective it is

ARIES29 profile image
ARIES29 in reply toBrad70

Sounds good Brad70. We cant live forever but thay did say it only lasts for 3 years then Castrate Resistant?

Brad70 profile image
Brad70 in reply toARIES29

Dr said Eligard (lupron) for 3 years along with Darolutamide for the first 2 years. If PSA is still low at 3 years, it’s time to end ADT.

ARIES29 profile image
ARIES29 in reply toBrad70

Best of luck Brad.

Cody2362 profile image
Cody2362

that's the standard dosage ... if you have other issues they will start off at 600 mg which is what i started with; after 2 months I had ramped up to standard dosage as I needed to ramp up my heart meds to counter ... I have no additional side effects other than what I already have with Orgovyx (taking concurrently with Nubeqa)

Yzinger profile image
Yzinger

loaded question i understand but is there an average or some other metric of when Daro stops working for most folks?

ARIES29 profile image
ARIES29 in reply toYzinger

I was told 3 years then C Resistant

Yzinger profile image
Yzinger in reply toARIES29

uggg, I hope that is not a hard and fast rule so to speak

TJS-1 profile image
TJS-1

I started the 1200 mg/day prescribed dosage as a monotherapy Sept 2022. Few noticeable side effects and PSA went undetectible (<.01). Elected to reduce dosage to 600mg/day after a year, with same excellent results (PSA=0)through June 1 this year. Reason was cumulative fatigue - seems to occur similarly for me with all 1st and 2nd gen ADT. Read the medication insert closely; says dosage less than 600mg/day may not be effective, so we suspect trial levels were between 600 and 1200. Taking a vacation now until PSA becomes detectible, at which time will resume and hopefully get more time out of this med.

FinnO profile image
FinnO

I have been on Orgovyx and Darolutamide for almost 18mos. My Daro strength has been 900mg/day for the past 9mos because full strength @ 1200mg/day dropped my ANC to .8 x 10^3 mcL. 20% of users can be ANC affected so make sure you get regular blood work. After a few months of cause/effect testing we settled on 900mg/day which keeps my ANC around 2.0. Stopping Daro completely my ANC returns to normal. I get off both drugs (and all the other crap that comes with the combo) in another month to see what happens besides an increase in ANC and QoL. 🤞🏻

ARIES29 profile image
ARIES29 in reply toFinnO

So far I have been on Zoladex every 3 months & Daro 1200mg but will see if 900mg works same. Thanks.

j-o-h-n profile image
j-o-h-n

I take Nubeqa - 2 Tablets 300mg each in the AM and in the PM. (Together with quarterly Lupron). So far it lowered my PSA and no side effects.....

No issues except, what did they do with the fucking U.

Good Luck, Good Health and Good Humor.

j-o-h-n

32Percenter profile image
32Percenter in reply toj-o-h-n

Is it Nubeee-kwah or Nubecka? The million dollar question

j-o-h-n profile image
j-o-h-n in reply to32Percenter

Ok then, I'll be j-o-h-n68Percenter

Good Luck, Good Health and Good Humor.

j-o-h-n

j-o-h-n profile image
j-o-h-n

Thank yo

Good Luck, Good Health and Good Humor.

j-o-h-n

binati profile image
binati

I started Nubeqa in Jan 23 after BCR and PSA of 1.47. ADT from Jun 2019 and RT in Oct/Nov 2019. PSA in Mar 2019 was 250 and Gleason 9/10. Before Nubeqa had thorough cardiac testing, kidney and liver function and PSMA Pet CT scan. Started for a month on 600 mg per day and then to 1200 with monthly testing of CBC(complete blood count), Kidney and Liver function test. pSA went down to 0.06 in a month. Now at .04 to .06 tested 3 monthly. Blood test every 2 months.

My age is 78 and I went for Orchidectomy before Nubeqa in Dec 23. No side effects from Nubeqa as far as I can tell. Mostly from lack of Testosterone.

No idea how long it will be effective but keeping my fingers crossed.

Hope this helps.

ARIES29 profile image
ARIES29 in reply tobinati

All advice helps, Thanks binati.

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