darolutamide in place of Zitiga. Anyone with experience using?

[Falcon10]

Treatment, on Lupron, 3 month shots, with Zitiga beginning July, 2023. I have mets in shoulder blade, Sacrum Coccyx, bi-lateral pelvic lymph nodes and Iliac wing.

Liver numbers over the course has come to a point that my MO is changing me from Zitiga to darolutamide. I would be interested to hear from anyone who has been on darolutamide and what side effects and their experience with darolutamide.

Much appreciated,

[Survivor86]

My experience in switching from lupron and enzalutamide therapy for six months to lupron and darolutamide for the next 18 was that the extreme fatigue and intense hot flashes and mood swings I had experienced lifted enabling me to go about my daily life Concurrent with SBRT to mets on upper spine and right femur my MO had started me on lupron and enzalutamide in 10/20. PSA was undetectable a month later and has continued at that level for the past 39 months, including the past 15 when I’ve been on vacation from both lupron and darolutamide.

[Okay4now]

I started darolutamide about 18 months ago. After 3 months, my psa was "undetectable," the first time I had heard that word since my diagnosis in 2001. And it remains undetectable. There have been no side effects! I wish you the best, brother.

[Falcon10 in reply to Okay4now]

Good to know and much appreciated.

[Joeym1040]

I was on Daralutamide for about 6 months. NO side effects at all. However it stopped working after 6 months.

[Falcon10 in reply to Joeym1040]

thank you for responding. Best to you.

[Teacherdude72]

Was on both Lupron, monthly, and Nubeqa for three years. Nubeqa had no side effects. Now on Holiday from both.

[cfhny in reply to Teacherdude72]

How long has your vacation been? How has your PSA been while on vacation?

[Falcon10 in reply to cfhny]

I am not on vacation from Lupron but stop Zitiga about two weeks ago so not long.

[cfhny in reply to Falcon10]

Sorry for confusion. My reply was to Teacherdude72.

[Teacherdude72 in reply to cfhny]

Just started first week of Jan 2024. First test 5 weeks in PSA was still less than 0.02. next test, my choice March second week. Out of town until then.

[j-o-h-n]

To the Falcon,

On quarterly Lupron and was on daily Casodex which was replaced by daily Nubeqa in April last year (2023): Only side effect is to your financial portfolio.... Here is a snapshot of my latest PSA tests, fortunately for me and all members I do not have snapshots of my DRE exams....

P.S.A. 1.98 as of 12/30/22

P.S.A. 2.14 as of 02/20/23

P.S.A. 1.24 as of 04/03/23 Nubeqa

P.S.A. 1.49 as of 06/27/23

P.S.A. 1.26 as of 08/15/23

P.S.A. 0.80 as of 11/08/23

P.S.A. 0.72 as of 12/18/23

P.S.A. 0.61 as of 02/12/24

Note: Available in color and 3" X 5" index cards - include self addressed unsealed envelope with a small donation to MaleCare..

Good Luck, Good Health and Good Humor.

j-o-h-n

[Falcon10]

j-o-h-n, thanks for the stats and love your humor.

[Steel67]

same as the others no side effect from Nubeqa- I experienced a one month bump from .06 to .09 then down to .04. Zytiga was rough on me - blood pressure and brain fog.

[NIKKIWOOD]

for those of you who have taken Nubeqa, what was the monthly cost? My insurance will NOT pay for it.

Thanks.

[Jazzman2023 in reply to NIKKIWOOD]

Hi, are you saying your insurance will pay for Zytiga, but not Nubeqa ? Interesting...

[NIKKIWOOD in reply to Jazzman2023]

No, my insurance did NOT pay for zytiga either............

[Derf4223 in reply to NIKKIWOOD]

Forget insurance -- abiraterone == zytiga is generic. There are a lot of ways to get it legitimately for cash. I use scriptco.com, about $300 for 3 months 120 x 250mg.

[kainasar]

Nubeqa sounds good for less SE's , if one can afford it, but is it worth it compared to abirat, enza, & jerleada? Have been studying this. Seems ok for mHSPC, & nmCPRC, but for mCRPC ? Not sure. Looks like one needs decataxel with it for mCPRC. But if one has to use a taxane anyway, why not use doca with abiraterone?

perplexed.

[Maxone73]

On Daro since last september. No side effects I must say, and till today my PSA has kept declining. 🤞🤞