Met with my urologist today and he mentioned starting xtandi and/or Erleada. This is the first I’ve heard mention of these drugs for my treatment. I’m going to do some real research, but thought I’d check in here first.
Any experiences? Caveats? Knowledge?
Me? Stage 4 with spread to pelvic nodes. Currently on orgovyx. Just finished IBRT.
thanks in advance.
I would ask Why Not "Darolutamide" ?
Now I’m really confused.
All three are from same class
Daro has fewer SE, almost none
That's funny. Join the club. The more you read the worse it gets. Me, Xtandi for 7 years with Eligard every 6 months, 8 cycles chemo, Xgeva for 3 years, etc. "Extensive and innumerable bone mets", abdomen lymph nodes mets resolved. I think Xtandi is now starting to fail. Will know in about 2 weeks if psa is still rising. 0.2 to 0.4 in 6 months. Probably do bone scan and PET scan in June or July. What, me worry?
Update: Bone scan and CAT scan suddenly scheduled for next week. What, me worry? Kaiser probably just needs the money. A cynic is born every minute.
Remember I'm on your side.........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/24/2023 4:59 PM DST
That makes me very uncomfortable. I don't want to be a loser.
Sometimes I make myself laugh.
Made me Laugh Out Loud....... but no one home to hear me.........
Good Luck, Good Health and Good Humor.
j-o-h-n
No one, but a pile of cats. I bet you drag Dolly out of the closet to listen to your jokes. She probably jerks around and says "Kill me now. Please, kill me now."
Darolutamide is fir non metastatic ( castration resistant)..sounds like this poster has spread
Its approved for metastatic : fda.gov/drugs/resources-inf...
I think that’s why my husband was given Erleada because it is also for meta cancer.
More confusion.
I would ask to start with Zytiga (Abiraterone), and save the Xtandi for when/if you become castrate resistant. Who knows, the EBRT might have been curative!!!!
(Im not a doctor, but I have worked on numerous medical TV shows)
Still_laughing. (Im not a doctor, but I have delivered numerous truck tires)
he mentioned that the Abiraterone was the older treatment, and had worse side effects (had to be taken with prednisone, I believe? Shoulda taken better notes…).
Sorry, may be adding more confusion. My MO said in his experience in prescribing both Abiraterone and Xtandi more of his patients have reported worse side effects with Xtandi than with Abiraterone. Ancedotal information to be sure but that is what he told me.
I’m on Abiraterone, with Prednisone, for a second time. This time the side effects are much better than my first time on it. Not really any worse than Lupron alone.
Another possible consideration is cost. Because Abiraterone is a bit older it is the generic version of Zytiga. There are no generic versions of Xtandi or Erleada available yet. It’s not the reason I’m on Abiraterone but the cost difference is considerable, even with insurance. I see you’re 64 yo and in the US so I assume you’ll be going to Medicare in the near future. This is my first month on Medicare and I did some cost research before deciding on my Part D plan. On Medicare Xtandi would cost me $8000/yr and Abiraterone will cost me around $1000/yr. I didn’t specifically look at Erleada but since the cost is similar to that of Xtandi (approximately $15000/month without insurance ) I assume the out of pocket on Medicare would also be $8000/yr. Cost shouldn’t be your primary concern but it might be a factor for you to consider.
Medicare Part D out of pocket is capped now at about $3500. Next year it will be lower, about $2500 I think.
Not so for tier 5 drugs (most cancer drugs are tier 5) per Dr. Google
How much does a Tier 5 drug cost?
Tier 5: Specialty drugs
These are the most expensive drugs on the drug list. Specialty drugs are used to treat conditions like cancer and multiple sclerosis. They can be generic or brand name. For most plans, you'll pay 25% to 33% of the retail cost for drugs in this tier.Feb 6, 2024
The explanation of this even on the Medicare site is way too complicated but here it is in English:
>As of January 1, 2024, people with Medicare Part D are no longer responsible for five percent prescription cost-sharing in the ‘catastrophic phase’ of coverage. This means that once a person reaches the catastrophic phase of coverage in 2024, they have no out-of-pocket responsibility for covered drugs for the remainder of the year.
With this change in effect, Part D enrollees who take only brand-name drugs in 2024 will have a cap of about $3,300 for calendar year 2024, according to a February 2024 Kaiser Family Foundation brief.
However, the Centers for Medicare and Medicaid (CMS) estimates that for some people enrolled in Medicare Part D who have very high drug costs, their out-of-pocket costs will be capped between $3,300 to $3,800.
panfoundation.org/everythin...
Thanks… this is a concern, plus I’m turning 65 this year, and have to figure all of this out.
start researching this now. Medicare.gov has tools to help you find the best supplement and also drug plan in your area . ( or Medicare Advantage plan , which most of us don’t recommend). Talking to an insurance broker can help but beware of which products they are selling so you don’t get a one sided story.
JP, make sure you get a supplement and not Medicare advantage. Advantage is limited to docs in your PPO. With a supplement (I have Blue Cross) you can go to any hospital or doc in the nation including cancer specialist centers.
Also some plans do not include Mayo or Cancer Centers of America. We are grateful a broker saw this and switched my husband a couple years ago because now his oncologist is at at Mayo.
Like PCa, not all experiences with Medicare Advantage plans are the same. I have a United Healthcare Medicare Advantage plan and I am not limited to a network. I can go to any provider as long that takes Medicare. I have not had any denials related to my PCa. A PSMA scan with a PSA of 0.18 was approved, Like almost everything related to this malady, there is no "one size fits all" and every aspect of care has to be researched.
I read that as well and am still confused on what it means for me. I do know when I put in Xtandi in United Healthcare’s Medicare drug price estimator it says my out of pocket would be $3197/month until I reach the $8000 catastrophic level and then it’s no charge for the rest of year.
It is confusing. If you go to medicare.gov and enter your prescriptions after logging in it should give you an accurate out of pocket max by pharmacy for your plan.
The $8000 is the combination of what you pay and what "other" parties pay for you. The drug manufacturers are required to pay part of the cost of name brand drugs.
>For 2024, the new prescription drug law places a cap on annual out-of-pocket costs on Part D drugs if you reach the catastrophic coverage phase, which begins at a threshold of $8,000 in what’s called true out-of-pocket (TrOOP) costs. For most people, you’ll contribute roughly between $3,300 and $3,800 toward the cap of $8,000, and then pay $0 for your covered Part D drugs for the rest of the year.
The drug manufacturers have to pay a portion of the $8000 for name brand drugs:
>•Using only brand-name drugs, you’ll have around $3,300 in total out-of-pocket costs.
• Using an average amount of generic drugs, you’ll have around $3,400 in total out-of-pocket costs.
• Using a higher-than-average amount of generic drugs, you’ll have total out-of-pocket costs of approximately $3,800.
• Using only high-cost generic drugs, your total out-of-pocket costs are approximately$8,000 because you didn’t take any brand name drugs (which a manufacturer would make discount payments for under the Medicare Coverage Gap Discount Program).
cms.gov/files/document/lowe...
This is great info. Can I double-like it?
Thanks for this explanation. On Erleada and the first month bill is $3,250 so thought we’d be paying up to the $8,000. Next year should be so much easier with the $2,000 cap.
You have the correct info I believe !!! The limits were passed specifically to address the excessive out-of -pockets cancer patients face!!!
You are close. Due to the inflation reduction act in 2025 Medicare out of pocket cost cap is 2000 dollars per year, donut hole will be eliminated.
Erleada also subject to the $8,000. But I believe next year the cap goes down to $2,000. I guess we will find out for sure soon. It is very confusing!!
Yes that is correct. The max out of pocket for 2025 is $2000, thank God
What do you mean cost should not be a factor? Every year thousands of people die for want of enough money to pay for drugs and medical care……when I progress to castrate resistant……it’s a death sentence if my only choices are erleada and Xtandi……can’t possibly afford them…….
Sometimes it pays to be poor. My Xtandi at more than 6 and a half years (let's say $10,000 a month) is about $810,000. Add in chemo and etc. and I'm a Million Dollar Man. Kaiser low income medical program has paid for it. Don't get me wrong. I am not bragging or anything like that. Just pointing out an option that may help someone.
I’ve been on Abiraterone for 2+ years. At the beginning it was packaged like an iPhone with days indicated. Now it’s just a block of tablets. I assumed this was cost reduction. Now I’m wondering if these generic looking pills are less effective than their Zytiga counterparts. Any thoughts?
Interesting. I was on Zytiga about 6 1/2 years ago and it was just a bottle of pills. I I would have liked a bottle that could tell me if I’d taken my pills that day. Now I’m on Abiraterone and it’s also a bottle of pills.. Both seem equally effective.
I’m not sure how readily insurance will pay for Zytiga now that there is a generic alternative. The companies I had before I went on Medicare ( BCBS and CVS Caremark through Cigna) would only pay for Abiraterone and I don’t believe my Part D plan through UHC will pay for Zytiga either.
Hence the reason dharma's fight tooth and nail to keep their patents.
You can go to Xtandi when Abi fails, but not vice-versa, at least for most.
You can overcome Abi side effects with exercise.
That's true (I think), but have heard here that the Xtandi would only be a short term solution after Abi. I'm going to ask for Pluvicto while continuing Xtandi or chemo while continuing Xtandi. Unless Tall_Allen reads this and tells me how stupid I am and has a better plan. I don't need your opinion j-o-h-n. And, as Tall_Allen points out: "Would you take the advice of someone on the internet?" And, can't remember what he said for sure but "90% or so of the information on this site is wrong." What an ego. Gotta love the man. He is like the super Jeopardy players. Me, I know nothing.
I doubt any of those drugs have zero side effects. Those SEs may vary by individual, but men on this board have reported issues with both of them. Darolutamide has not been used that widely yet for metastatic PCa; perhaps it does have less SEs--but hard to know until you try one versus another, which is rarely done.
Here's some of what I dug up when looking in to this last year:
onclive.com/view/real-world...
urotoday.com/conference-hig...
jamanetwork.com/journals/ja...
You wouldn't want to treat this as gospel for lots of reasons, such as how the data was collected, it's not based on a clinical trial, etc. but it's a place to start.
There is an ongoing clinical trial (PREDICT-RT) using Erleada +ADT for 24 months:
clinicaltrials.gov/study/NC...
The SOC is 2 yrs of abiraterone+ 3 yrs of ADT based on the STAMPEDE trial
I notice the mention of “gene risk score” and hear of people getting genetic testing. What’s that all about? Having PC, I don’t get the testing part…
They get a Decipher report (on prostate biopsy tissue) for all patients on the trial. I think in your case, with LN metastases, it's just a formality. Those with higher scores are randomized to get either 2 yrs of Erleada+ADT or just ADT. If your doctor can get you 2 yrs of Erleada without the trial, you can avoid randomization.
TA - is it true if you take Zytiga and failed means Xtandi and other drugs from same class fail too..so avoid that patient should take Xtandi or similar drugs from the class that will reduce risk of failure after Zytiga ? Sorry for more confusion
There is cross-resistance between Zytiga and Xtandi or similar. They do usually work, but not for very long after Zytiga fails. New info is that docetaxel can reverse Xtandi resistance:
prostatecancer.news/2022/10...
I learnt hard way, I think JpBurns should start with Xtandi or similar drugs. I am preparing my family for Docetaxel so I can start Xtandi with more effective results
Have you considered consulting with a medical oncologist.....generally considered more the experts when drugs come into play for metastasis.
I'm on the full dose of mono enzalutimide (Xtandi).I have what I would classify as minor fatigue. I have zero brain fog. Basically, no different than mono ADT.
My initial treatment included 2 years of ADT + zytiga. As of today, the enzalutimide experience has been better.
Xtandi is a chemo drug, sounds like you need to find an oncologist for the cancer. I’ve been on Xtandi now for almost 8 years, but I started it after 6 rounds of chemo. Stage 4 here with Mets in my back,hips, ribs and sternum.
I don't believe it is a chemo drug, it is an ARPI medication, Androgen (testosterone)receptor pathway inhibitor. Also known as enzalutamide.
A matter of semantics that was discussed here a few years ago.
Xtandi , AA, etc. are chemicals, they are systemic therapies, yet--not what we think of as chemo traditionally.
according to there web site it kills cancer cells. It therefore listed as a chemo agent
I’m 3 months in on Erleada and Lupron… standard SE. Hot flashes, no interest in sex, gaining a couple of pounds. That’s about it.
We will be asking our MO next visit about estrogen patches for the hot flashes and to protect bone health. He was told to take calcium supplements.
Try to get him a DEXA bone density scan, that will give you a baseline. You may have better luck with a GP, our MO said no to the estrogen patch because it's not SOC (also suggested calcium supplements) but the GP said yes. Six weeks into Orgovyx and he already had osteopenia despite the fact that he works out almost every day.
Yes he gets those bone scans and just had another one with blood tests and scans to check the mets. Will report back on Mayo visit. I will be pushing for the patches!
I started with xtandi. I was on it for about 6 months. It quickly brought my PSA down to undetectable levels. I had no copay due to a coupon from the manufacturer. Unfortunately, the side effects were becoming unbearable. It included fatigue, high levels of BP, chronic constipation and brain fog. Fortunately, shifting to zytiga along with prednisolone, and lupron injection every six months, has given me a more favorable outcome. As stated by another warrior above, zytiga works very well if you engage in regular exercise. In my case brisk walking up to 3 miles 6 times a week, along with wright bearing regiment, every now and then has helped. My side effects has gone done remarkably. Talking to an oncologist made a huge difference. Best to you my brother. To all the warriors, be optimistic, as the drugs that will cure us are coming.
Good day . I am on Xtandi since November and my PSA dropped from 155 to 49 now . Hope this will help and good luck to you .
Starting on this journey, as I did nine years ago, I found the Harvard Medical School Annual Report on Prostate Diseases, drawing on the expertise of Harvard Medical School faculty, to provide an excellent introductory discussion of available treatment options. Over the years, I’ve recommended it to a number of friends.
same diagnosis for me. Been on it for over one year, was effective, not so much now. Knocks out your testosterone. Side effects, hot flashes, brain fog, lethargy, no libido, stomach fat. Needle every 3 months hurts. Switched to Zoladex pellet, much easier to take. Have to say not fun in my case. But everyone is uniquely different. Good Luck.
the Embark trial showed the efficacy of using Lupron (ADT) along with Xtandi in situations like yours. It was approved in November by the FDA.
Me, too. Stage 4 with spread to pelvic nodes. Finished IMRT for prostate in 2021, then for nodes in 2023. Started on orgovyx (relugolix) in Dec 2023 and added abiraterone (zytiga) in Mar 2024, called doublet therapy.
Zytiga (abiraterone) is an ARPI (androgen receptor pathway inhibitor) introduced over 10 years ago.
Xtandi (enzalutamide), Erleada (apalutamide) and Nubeqa (darolutamide) are ARSI (androgen receptor signaling inhibitors), introduced in that order in recent years.
They are all "2nd generation" drugs that complement ADT (androgen deprivation therapy) by working differently.
My Uro's pharmacy department says Xtandi has strong side effects, and a friend who is on it agrees. I was recommended Erleada as easiest to tolerate.
Now I digress. I have a history of a few seizures, with no explanation. My Primary Care theorized it could be from Zocor (simvastatin), which crosses the BBB (blood-brain barrier), and changed me to Crestor (rosuvastatin).
Xtandi and Erleada cross the BBB with a brain:plasma ratio of 27% and 62%, respectively. Nubeqa says it does not, but my Uro said it still crosses a little. Evidently because of this, people with seizure history were excluded from Xtandi and Erleada trials.
I would have chosen Nubeqa, but was told I did not qualify because it is only approved with the chemo Taxotere (docetaxel) in triplet therapy, or in doublet for people who have become castrate-resistant.
The Uro downplayed my fears of seizure and recommended Erleada. But I chose Abiraterone as the safest for me. It must be taken with a Prednisone to make up for its suppression of the adrenal system. And I must say the side effects have been minimal so far.
I’ve taken Xtandi for nearly 10 years now after being dx stage 4 Gleason 9. It is a very effective drug, SE’s include mainly fatigue, but also head aches, muscle aches, BP issues etc. There are medications that can be prescribed to offset these SE’s along with exercise, diet and proper sleep. Xtandi has a patient assistance program that is not too difficult to qualify for that can result in receiving it at no cost, information is on their website. Lastly, there is a ton of information available online about Xtandi, it’s been around for quite some time, I recommend that you do your research on it if you have any questions.
Ed
I’ve been on Orgovyx and my MO added in Xtandi a couple of months ago. Recent analysis showed doing so resulted in a better outcome when starting Xtandi early. This was well covered in a Harvard Medical article this past December.
Been on Erleada since May 2020 with few ill effects. Never been on Xtandi. FWIW, Lupron also since the same time albeit temporarily paused since October 2023 due to excellent scan results two years in a row.
If you feel like it get another doctor's advice on which one is better for you but go forward with hope and without fear.
My husband also was just started on Erleada with quarterly Lupron. In two months his PSA has gone from 9.8 to 1.0. So far side effects minimal. Hot flashes seem to be from the Lupron. On Medicare so not sure what total out of pocket will be this year but the monthly cost is $3,250! He has a handful of bone Mets . Told him his latest scan shows they are responding also but we see the MO in two weeks for more detail on this.
I would seriously consider getting an oncologist. Urologists are surgeons. They are not well trained for cancer treatment as a group. There are obvious exception but in general….
been in titan trial since dx 2017.......aprox 1.1million of free erleada.....but at a cost of qol.muscle loss weight gain and now cognitive issues..am only 68 am thinking of quitting ...while i still know who my wife and dog are...not worried bout forgetting wife...but my dog......☘️
If your wife reads this, you may be not worried about forgetting ex-wife.
true that....
I have been on Xtandi for 24 months, it's the level two hormone drug that normally goes hand in hand with a three monthly ADT injection, the injection kills off the testosterone in the body and Xtandi goes inside the prostate turmors and kills it off the testosterone from within. Together they put the turmors asleep hopefully bringing the PSA down to zero
Don't ask for Abiraterone it is the same type of drug and nether will be offered to you if or when the one your on fails,look them up on the web
My husband had stage 4 with metastasis to bone with lymph node involvement. He took both Xtandi for 6 months and then Zytiga for 6 months. His psa was not significantly decreasing. They tried 3 treatments of Docetaxel but his spa was not responding. His last treatment was radium 223 but his blood work was drastically affected so had to stop after 3 treatments.
I am taking Nubeqa (Darolutamide) with Eligard after IMRT. I feel "normal" and PSA is undetectable. Gleason 10, Stage 4a PCa.
What, me confused?
interesting. I believe I’m on a similar track as you although I’m having to wait until August to start my treatment. Also Stage 4 with Mets in nearby lymph nodes. The only thing I’ve talked to my RO about is how soon I will take an ADT holiday from Org. No new regimens post RT have been discussed at all.
Just a quick note to thank everyone here for the great info. Y’all’re the best internet source for all things prostate cancer. It’s terrible/amazing how this disease gives us all a medical education, whether we want to or not.
As a follow-up… I met with my (new, local) oncologist and he gave me lotsa useful information, similar to what y’all have been saying. We talked about the “Stampede” study, and I’ve decided to add Zytiga (Abiraterone) and Prednisone to my ADT.
Now I just need to learn how to pronounce these drugs.
Erleada
Erleada and Dizziness 
To Xtandi or not to Xtandi?
Erleada copay question
