From what I have been reading , is Nubeqa supposed to be the ARPI which most seem to tolerate well compared to the others ?
Is it well studied to be effective long term as are Zytiga and Xtandi ?
Darolutamide ( Nubeqa) most well tole... - Advanced Prostate...
Darolutamide ( Nubeqa) most well tolerated ARPI ?
Written by
Simpson80
To view profiles and participate in discussions please or .
50 Replies
•
It's never been randomly tested against those others, so no one knows. It is, so far, only indicated for (1) non-metastatic, castration-resistant PCa and (2) for newly diagnosed men with metastases in combination with docetaxel (triplet).
So are the ones which have been indicated for newly diagnosed men with mets , only zytiga and xtandi ? Thanks.
also Erleada (apalutamide).
Read on some post someone saying some new studies show Erleada may be effective for longer than zytiga or xtandi. Any idea about this ?
I haven't seen that, do you have a link to that study? There was a trial showing that Zytiga -> Xtandi lasts longer than Xtandi - Zytiga.
I don’t have a link. On another board someone said their doctor said that.
I haven't seen it. Maybe his doctor got it confused with the Xtandi study.
Hi Allen ,
Do you know how doctors are prescribing nubeqa for hormone sensitive newly diagnosed patients if it is not yet indicated for that situation. I believe trials are on for that ?
Sometimes insurance will approve off-label use. There is no data that it is any more or less effective, or that side effects are any more or less worse. There is a lot of hype about it without proof among uninformed patients, however.
the fact is that it does not pass the blood-brain barrier, hence it gives less brain fog. It also did quite well in the following studies: ARASENS, ARANOTE and ARAMIS, I would check them out
bayer.com/media/en-us/darol...
They will soon try to make it available for metastatic hormone sensitive patients as well.
"They will soon try to make it (darolutamide) available for metastatic hormone sensitive patients as well."
That would be great. Where could I look for more info on that?
I am metastatic and my doctor prescribed it. I think you just need to find the right doctor who will work with you.
My doctor said he could not simply prescribe darolutamide, because I did not meet the requirements and it would be denied (I guess by Medicare). He showed me a form I would have to fill out that would show my history as treated and metastatic, and ask for an exception based on some justification. I had no justification. He said the chances of the form being approved were slim to none, and the answer would take months. I needed to get a doublet added, and went with abiraterone.
Maybe get a second opinion, if you can. That's how I got it. My first doctor didnt even know about it! I was also able to get on a program at Bayer, so I get it for free. Not sure where you are, but I had better luck with the doctors at Dana Farber in Boston.
My insurance company refused it to me. I tried Xtandi and had a bad experience so back on Zytiga.
What bad experience with xtandi ?
Correct. I started it on recurrence after initial therapy. Having already been on Zytiga for 2 years and therfore by comparison I tolerated it very poorly. Fatique, brain fog, vision, depression. I tried for Daralutamide again and was refused again. I am doing well back on Zytiga so it's probably the best option for me.
I am in Medicare and was when Nubeqa was initially prescribed. No issues nor even a delay of any kind.If you doctor told you that they are misinformed. I was even ogliometastic before Nubeqa.
He is certainly not misinformed, as he gave me a Nubeqa application form to fill out. I did that, but gave up after realizing I had no chance. I see him in a couple of weeks and will ask for the form and post it here. There are requirements for Nubeqa, and people do get denied.
Cannot deny what you say but I didn't have a form to fill out. Possibly because I have a Medicare advantage plan.
Best wishes with your treatments
my husband has been participating for 2 years in Bayer's Arasec phase 2 trial for metastatic hormone sensitive pc at diagnosis. The trial is testing the effectiveness of Darolutamide (Nubeqa) in combination with Lupron only. The trial began in '23 and I believe ends in '26. So far so good for my guy.
I have been on Nubeqa for 6 months now. It has reduced my PSA to .017 from 28 along with once a month lupron injections. It causes alot of fatigue and get joint pain once in awhile but nothing that causes problems that aleve or Tylenol can't take care of. I have no other complaints .... I take 2 pills twice a day when I remember. Oh yeah it does cause me a little brain fog but that I had on just lupron. If your Doc suggest it, I suggest trying it yourself. At first I was really hesitant to start taking it but with my PSA raising I decided to give it a try. Do not regret starting it.
So brain fog is not due to Daro. 😄
My brain fog did not increase after starting Nubeqa. My only complaint taking Nubeqa is fatique and once in awhile joint pain... but not even sure that is from Nubeqa since I am 78 soon to be 79. May be from arthritis. I do have greatly increased fatique taking Nubeqa but it is manageable
So far 5 months in Darolutamide ( Nubeqa) has been good to me,Taking with Orgovyx - gave me some knee joint pain for 3 weeks only. since then some days I take a few naps now and then. but I always have done that. So for me along with many others who say it's well tolerated . Orgovyx lowered my psa before I started Nubeqa so can't speak for what the Nubeqa is doing other than my onco says need both and chemo
I have been on it for 16 months. It does not cross the brain barrier, which could be why.
I just checked all my drugs for drugs interactions on drugs.com and it is interesting that neither my GP, nor .my specialists, nor my pharmacist didn't warned me about drug interactions which can happen when you are using 8 drugs. Therefore my recommendation is from my experience go to the internet site, register and check all your drugs for possible interactions and do not just assume that the doctors will check anything for you. After checking don't stop your drugs but ask your doctors for input now when you have the information.
I don't know about longevity. I have read here people who have gotten from nine months to a year. I have been on it for three months with trelstar the main side effect I have had is a rash with hives that I am treating separately. It was supposed to be very rare how lucky I am. I got the rare one ha ha ha I was on and Zytiga and the Zytiga failed after a very long time. Unfortunately . Luckily I got a grant to pick up what my part D didn't cover.
Our new doctor just put my husband on Nubeqa- yesterday. He is newly diagnosed mHSPC. He's been on Orgovyx for a month and PSA dropped from 36 to 2.7 and testosterone went all the way down to <10. What's funny is that she said that she had participated in trials for the other three drugs, and yet her recommendation always goes towards the one she wasn't a part of, Nubeqa due to the better toxicity.
We'll see how it goes!
Very interesting. Thank you
Do you know what his baseline testosterone was ?
by the way, to all the people taking NUBEQA or thinking about it: it increases bio availability of statins! So you may need to reduce the amount of statins that you take (if you take them). Sometimes some fatigue etc can be due to statins.
I just found this out here......thank you, thank you, thank you to everyone. I'm on 10mg of Lipitor. I'm stopping immediately
I believe that you would need to reduce the dose of rosuvastatin if you take it. I don't really know for lipitor but 10 mg is not much. I am taking 40 mg crestor (rosuvastatin) maximum dose. You should find out about lipitor for yourself but don't stop it if you don't have to.
I have 4th stage Prostate cancer (metasticised to the hip) and I have been using Nubeqa and Orgovyx . It's been very effective lowering PSA and drawing back tumors. Like someone else said, Nubeqa doesn't cross the blood brain barrier so it creates less brain fog. I notice very little side effects at all from Nubeqa. I still have side effects from Orgovyx, but much less than other ADT drugs like Lupron.
Oligometastatic but still hormone sensitive, following SBRT to two metastases, I was put on a 24 month course of Lupron and Xtandi. This round of treatment followed surgery, radiation, a 24 month course of Lupron plus bicalutamide and and a nearly 3-year “vacation.” I couldn’t tolerate the Xtandi (extreme fatigue, brain fog, and mood swings) so after 6 months my Dana-Farber MO recommended switching from Xtandi (enzalutamide) to (darolutamide) with Lupron for the next 18 mos. He obtained Medicare approval. Intolerable side effects side effects dissipated quickly and my PSA continued to be undetectable for three years. it crept up to .04 in January and in early May of this year to .08. I’ll be tested again in two weeks. But for more than three years now I’ve felt quite good. I celebrated my 75th this past December. Assuming I’ll need to resume ADT at some point I’ll ask for Lupron plus Nubeqa. Each of us of course responds to these drugs differently, as does our cancer. Best wishes to you as you go forward.
thanks. Most people seem to want doing ok on Nubeqa
If anyone cares, my PSA was 0.41 as of 06/21/2024, the lowest it has been since 11/05/2013 when it was 0.31.
My M.O. stopped the Casodex and replaced it with Nubeqa on 03/09/2023 (2 tablets 300mg each, in the morning and the evening - with food).
I still take my Lupron medication every 3 months.
p.s. I think I got my last erection sometime in 1952....(TMI)
Good Luck, Good Health and Good Humor.
j-o-h-n
Did you have surgery or radiation to the prostate funny man?.....love your sense of humor
I can state from over two years on Nubeqa that I had no additional side effects other than monthly Lupron. My psa reached <0.02 which is undetectable. I have been on holiday since December 2023 and recently my PSA was 0.13.
I am in my tenth year initial diagnosis G9 aggressive. Radiation treatments only.
Present age 76.
It interacts with basically ALL statins:
nubeqahcp.com/safety/ddi-pr...
With rosuvastatin nubeqa has a major interaction.
drugs.com/drug-interactions....
Interactions between your drugs
Major
rosuvastatin darolutamide
Applies to: rosuvastatin and Nubeqa (darolutamide)
Darolutamide may significantly increase the blood levels of rosuvastatin. This can increase the risk of side effects such as liver damage and a rare but serious condition called rhabdomyolysis that involves the breakdown of skeletal muscle tissue. In some cases, rhabdomyolysis can cause kidney damage and even death.
With Atorvastatin and Nubeqa the interaction is moderate.
drugs.com/drug-interactions...
Interactions between your drugs
Moderate
atorvastatin darolutamide
Applies to: atorvastatin and Nubeqa (darolutamide)
Darolutamide may increase the blood levels of atorvastatin. This may increase the risk and/or severity of side effects in some patients. Talk to your doctor if you have any questions or concerns. Your doctor may be able to prescribe alternatives that do not interact, or you may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.
I've been on Nubeqa since Feb 2020, something like 8 months after it was first approved. Original diagnosis May 2010, Lupron worked until summer 2018, had docetaxel August-November 2018, and when it rose significantly after that is when my doc prescribed Nubeqa. Only mets on scans were three local lymph nodes and the chemo reduced them to the high end of what's considered normal, so perhaps that's how on MO was able to get me qualified. At the time I asked why he picked Nubeqa and he said it had a better side-effect profile than the other similar options. Do all the others cross the blood-brain barrier? It did give me a lot of body aches, but that mostly cleared up within a few days. The fatigue is still worse than with Lupron alone.
In Nov 2023 I switched from Lupron to Orgovyx at my request. PSA got down to 0.04 when I was first on Nubeqa and it slowly crept up to 0.29, but my last lab work a few months ago show it jumped to 0.45. I know Nubeqa can't work forever so I'm sort of questioning if this is a Nubeqa failing, or if it's possibly due to Orgovyx not working quite as well as Lupron for me. I have considered whether or not I should ask to switch back.
As an aside, not directly related to this thread, I am using cannabis at night, via a dry herb vape. My MO does not know because I know cannabis is a huge brick wall for him, and I'm very confident I've researched it more over the past decade than he has. I know Orgovyx has a conflict with CBD, but after doing a lot of digging I decided since I'm using strains that are very low CBD and take my Orgovyx mid-day, it should be fine. I also typically drink plenty of water each day, which helps flush out CBD. But I have to admit it's niggling at the back of my brain if that Orgovyx/CBD interaction could be an issue. I lean on the cannabis heavily for help with sleep problems.
If the PSA rise is due to Nubeqa failing, I'm wondering what's next on the menu for me.
Interesting topic. I have done quite well with Nubeqa for the most part....but, I am currently going through tests to maybe hopefully figure out why I have some lingering pretty intense joint pain.
Feet, knees and hips are pretty bad. Once I am up and doing stuff it sometimes get better but its just so weird.
I spend time in the gym and lots of walking. Perhaps another clue is every morning my glutes are on fire - like if you did heavy squats for 2hrs night before. Very much it is muscle pain akin to working out,.
It makes sense to me that they'd be specific about the specific component in cannabis with the conflict. A number of strains have very low CBD content.
I took Nubeqa for 6+months prior to having a chest node radiated and a single prostate bed node removed surgically. Not the easiest path but I'm a "young" 72 year old.
Not what you're looking for?
You may also like...
Darolutamide (Nubeqa) Vs Enzalutamide ( Xtandi)
Are there any studies comparing efficacy and side effect profile of darolutamide Vs enzalutamide...
Any experience with Nubeqa or Darolutamide?
Happy New year Y'all. My Dr is planning to put me on Darolutamide (Nubeqa) after the first of the...
Anyone on Nubeqa (darolutamide) with mets?
From what I can find, it appears that darolutamide is only approved for non metastatic castrate...
Which statin to take with Nubeqa/Darolutamide? Pitivastatin or a different statin?
I took someone's advice and called Bayer Corp today. What a waste of one hour. Minimum wage level...
Darolutamide
New (Wednesday) Phase 3 paper in the NEJM [1].
Darolutamide (previously known as ODM-201) is an...
Darolutamide
Nubeqa headaches? 
Darolutamide
What's different between Xtandi vs NUBEQA® (darolutamide) vs ERLEADA® (apalutamide)
Enzalutamide or Darolutamide
