darolutamide in place of Zitiga. Anyo... - Advanced Prostate...

Advanced Prostate Cancer

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darolutamide in place of Zitiga. Anyone with experience using?

Falcon10 profile image
19 Replies

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,

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Falcon10 profile image
Falcon10
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19 Replies
Survivor86 profile image
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 profile image
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 profile image
Falcon10 in reply toOkay4now

Good to know and much appreciated.

Joeym1040 profile image
Joeym1040

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

Falcon10 profile image
Falcon10 in reply toJoeym1040

thank you for responding. Best to you.

Teacherdude72 profile image
Teacherdude72

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

cfhny profile image
cfhny in reply toTeacherdude72

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

Falcon10 profile image
Falcon10 in reply tocfhny

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

cfhny profile image
cfhny in reply toFalcon10

Sorry for confusion. My reply was to Teacherdude72.

Teacherdude72 profile image
Teacherdude72 in reply tocfhny

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 profile image
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 profile image
Falcon10

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

Steel67 profile image
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 profile image
NIKKIWOOD

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

Thanks.

Jazzman2023 profile image
Jazzman2023 in reply toNIKKIWOOD

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

NIKKIWOOD profile image
NIKKIWOOD in reply toJazzman2023

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

Derf4223 profile image
Derf4223 in reply toNIKKIWOOD

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 profile image
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 profile image
Maxone73

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

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