Darolutamide

[ARIES29]

Can anyone here advice on SE of this drug please. I have been on Zoladex this last 6 months & have a PSA of 1.03 now, coming off Firmagon before that. Now the MO advises a 3 month break & then start Darolutamide tablets.

Thanks for any input.

[Rob1053]

I have been taking Darolutamide for over a year and have no additional side effects from the drug. I take it in addition to Lupron which has terrible side effects. Not sure what other drugs you are taking, but for me it caused me no trouble.

[Izzygirl1 in reply to Rob1053]

What are your terrible side effects with Lupron? My husband is on that and Nubeqa (darolutimide) also since last summer. His main symptom so far is fatigue but working out everyday helps with that.

[Rob1053 in reply to Izzygirl1]

There are a lot of them. Fatigue is one, depression, hot flashes, bone loss, sleeplessness and of course ED, loss of libido, among others. Different for different people. The point is, that Darolutamide, doesn't make them worse. Good luck.

[Izzygirl1 in reply to Rob1053]

Yes… my husband does get hot flashes too along with those other side effects. PC sucks in so many ways. 😞 I hope your meds keep things quiet for a very long time!!

[Rob1053 in reply to Izzygirl1]

Thank you. Best of luck to both of you as well!!

[Ramp7 in reply to Izzygirl1]

Working out, staying as active as much as you can is key. Get off the coach, turn the TV Off.

[PSAed in reply to Ramp7]

That's it in a nutshell ! Best Wishes.

[Seasid]

I just wish to understand what is the purpose of stopping ADT injection for 3 months?

I am 5 years on ADT firmagon injections and tolerate it well. No hot flashes. Only that I am borderline osteopathic now with T score of -2.5 as a result of low testosterone. I should start yearly zoledronic acid infusions soon.

I would be happy to get darolutamide but my last PSA was 0.23 on Degarelix alone and I am not rushing with darolutamide as it can possibly introduce neuroendocrine strains of the cancer in maybe 15%. That is at least my fear.

I believe darolutamide is very good with the least side effects and very well tolerated. I am not a doctor only thinking with my own head as proper treatment decisions are very important.

I believe TA said that at PSA 2.0 and above they should introduce new treatment. That would be of course darolutamide for me if I could get it prescribed by my MO.

[Seasid in reply to Seasid]

Especially if the PSA doubling time is slow. I really hope that I can stay on firmagon as long as possible and without a very good reason I would not stop ADT. Maybe you should ask for second opinion at Peter Mac cancer center in Melbourne. I believe the private consultation cost is 400 Australian dollars by professor Murphy. You could maybe arrange a video teleconference and than the tumor board of the hospital could be consulted by the professor at their next meeting.

I wish you all the best just don't rush with your decisions as your PSA is still only 1. My PSA went up to 1.25 when I had my psma pet scan and we decided to radiate my prostate in my local Darlinghurst in Sydney by Genesis Care MRI guided linear accelerator. I paid about 2000 dollars and the rest was paid by Medicare. I just hope that my mets will stay hormone sensitive for some time. I didn't have any visible mets on the psma pet/ investigational ct with contrast and on the fdg pet scan. That is I made a decision to irradiate my prostate with sbrt. 38Gy in 5 fraction. I did that as otherwise I would probably need either chemotherapy or enzalutamide. My prostate was 95% full of crpc with SUV max 14 on the psma pet scan. I wanted to get rid of that crpc in my prostate as at some point the cancer in the prostate stops responding to global treatment and start to spread locally what is a big problem if it spreads to a rectum or bladder etc.

[ARIES29 in reply to Seasid]

Hello Seasid, To reply to your question about why stopping ADT. The MO suggested stopping ADT to let the PSA climb up again to check results of the Darolutimide. I am not sure I like being used as a lab rat & will go back to Firmagon if need be.

[Seasid in reply to ARIES29]

Exactly, just simply go back to firmagon, don't stop your ADT and when your PSA gets to 2.0 than start darolutamide.

Do you still have a prostate? At PSA above 1 you could have a psma pet/ investigational CT with contrast like I had it in a st Vincent public hospital nuclear medicine department by professor Emmett in Darlingurst, Sydney. We also have Genesis Care with their MRI Linac if you need it in the future. For that I asked my GP for referral to the RO.

Your goal is to keep the PSA down. TA said that it is a very bad idea to let the PSA go up. Could you maybe transfer your care to Melbourne? You could have the video consultation with professor Murphy for 400 dollars. I don't like the ideas of your oncologist.

[Derf4223 in reply to Seasid]

My MO says Lupron 3 month shots need 3 months from the last shot in order to be out of your body.

[Seasid in reply to Derf4223]

Understand that.

Maybe I don't understand the whole set up.

So after last shot comes only darolutamide and no ADT? Is that the plan? What was actually a plan?

Why not just add darolutamide anytime? I am confused now. Could you explain?

If they want to use only darolutamide without ADT it may not work, at least not long term.

Darolutamide is tested with ADT only.

I know that some people wish to try that out, but as TA said if the testosterone is not at castrate level maybe darolutamide alone (if that is a plan) will fail earlier without ADT than with ADT. I personally would try to keep darolutamide working as long as possible therefore with ADT only.

The other thing is that after Lupron even if you stop it the testosterone may not rebounce for some time.

Darolutamide should block the androgen receptors and if the testosterone is higher than the castrate level it may not work effectively in blocking the androgen receptors.

I really don't understand the purpose of darolutamide fully. What should it achieve except that it may either not work effectively and that it may fail earlier what is still an uncharted territory. Very experimental.

I would keep myself firmagon until the PSA is under 2 with it and than add darolutamide.

Even if the testosterone goes up on Darolutamide alone (no ADT) it is still questionable which benefit does it have. Would you feel better as a result of the high testosterone in a blood stream? (If that will happen?) But with the blocked androgen receptors?

For me personally the goal would be that darolutamide works longer, therefore I would not use it without ADT for that reason.

Yes, TA mentioned that it may fail earlier and than it may not even work effectively as it should.

[Seasid in reply to Seasid]

If Darolutamide is used without ADT. If the cancer progress earlier what is than the benefit if you may not even feel better on high testosterone? I would not be so brave to experiment on myself.

[ARIES29 in reply to Seasid]

I agree Seasid, Experiments at my risk of making the cancer grow is not a good idea. I will contact Peter Mac in Melbourne for advice on this.

I still have a prostate & had radiation in 2012 with little result.

[Peeffervescence]

I’ve been on Darolutimide and Lupron since 9/22. I haven’t noticed any SE over and above what the Lupron SEs are. My SEs seem pretty mild compared to what I’ve been reading here and elsewhere but then maybe people who suffer more tend to post more.

[ARIES29 in reply to Peeffervescence]

Thanks for the reply, I could not tolerate Lupron years ago so look forward to less SE with this Darolutamide but would like to try the T2 patch when available here.

[Survivor86]

Having not tolerated Lupron + Xtandi (enzalutamide), my MO switched me to Lupron + Nubeqa (darolutamide) after 6 mos. My PSA was <.02 at the time. I continued on Lupron + Nubeqa for the next 18 mos. and the SE’s were much milder. Fewer and less intense hot flashes and none of the intense fatigue, lethargy or mental confusion I experienced with Lupron + Xtandi. Each of us responds differently but I found that my general sense of well being improved considerably after I switched to Nubeqa. My PSA has remained <.02 for 24 months now, including the 18 that I was on Nubeqa. I’ve been on vacation from Lupron + Nubeqa the past 6. Hope you’re able to get the same relief. Best of luck.

[treedown in reply to Survivor86]

I am dealing with same extreme effects from Lupron and Xtandi and recently stopped Xtandi. My insurance didn't approve Darolutamide at first and and hoping they might now. I have had a rough time and will restart as my MO advises if I can't change but will try half dose and work back up slowly.

[Cooolone]

Darolutamide is certainly the preferred "lutamides" if he's been a choice. If you search the trial data, will learn the Daro seems to have better SE profiles with patients. Doesn't cross the blood/brain barrier may be a main contributor to that effect. But it is a 2nd level inhibitor, so there's that too.

Best Regards

[ARIES29 in reply to Cooolone]

Thanks Cooolone, I think the blood/brain barrier must be the key to less SE so will be trying it.

[Teacherdude72]

Just starting my third year with Nubeqa, easier to spell, and ps continues r <0.02.No additional side effects than with my monthly Lupron. Energy level has tanked. Vitamin B-12 6,000 mg daily, caffeine in dark chocolate and gym time help immensely. Admit frequent rest tops.

Age 75, diagnosed 2015 with G9 local Mets, 2, otherwise well.

A Positive Attitude helps greatly. Mine is like my blood type B Positive.

Live life fully and I wish all well

[Joeym1040]

Was on Lupron for 11 years then added Darolutamide. Worked for 8 months then PSA started rising. No additional side effects at all.

[PSAed]

Thanks for this post, very helpful . Best Wishes