Erleada without ADT?: Had IMRT to... - Advanced Prostate...

Advanced Prostate Cancer

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Erleada without ADT?

novatimo profile image
28 Replies

Had IMRT to prostate and pelvic lymph nodes in Dec 2015. PSA in August 2019 was 0.15 but dramatically rose in August 2020 to 2.42. Previously been through 3 short cycles of ADT between 2012 and 2016, with intolerable effects on my QofL. With my rising (but still low) PSA, I've been thinking of asking oncologist for Erleada, which I understand prevents androgens from attaching to receptors, but is usually prescribed along with ADT. Anyone here have experience of using Erleada alone, without ADT?

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novatimo
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28 Replies
Tall_Allen profile image
Tall_Allen

I really don't think you should do that outside of a clinical trial. Erleada seems to have worse side effects than Lupron, so I don't know if you'd be gaining any QOL for the extra risk you'd be taking. You may be able to do intermittent therapy with the two of them, like in this clinical trial:

meetinglibrary.asco.org/rec...

podsart profile image
podsart in reply toTall_Allen

Would daralutamide be an option?

Tall_Allen profile image
Tall_Allen in reply topodsart

Only approved for castration resistant men.

podsart profile image
podsart in reply toTall_Allen

Ok, thanks

tango65 profile image
tango65

Did you ever have metastases outside the pelvis during the course of your PC? Erleada is approved for metastatic castration sensitive PC. The clinical trials were done using erleada along with ADT and most MO will refuse to prescribe it without ADT.

fda.gov/drugs/resources-inf....

Without having had metastases at any time during all these years it will be difficult to get the insurance to pay for these drugs.

novatimo profile image
novatimo in reply totango65

Had a suspicious nodule in left upper lung. A needle biopsy found 99% of tissue was benign and the other 1% had only "minute fragments of malignant cells" and "a suggestion of gland formation, possible adenocarcinoma". However, I decided to have the upper lobe removed anyway to minimize possible micrometastasis. Post-surgery pathology report found "immunostains are not definitive, but favor prostate origin". So I'm assuming this was indeed a case of metastasis and that Erleada would be covered by insurance. Perhaps, as Tall Allen suggests, intermittent ADT might be a possibility.

GP24 profile image
GP24

I would recommend Bicalutamide instead. It is not as effective as Erleada but it works similar. Does not lower testosterone, low side effects, low cost. See this report by Traveller:

healthunlocked.com/advanced......

novatimo profile image
novatimo in reply toGP24

My MO had already prescribed Bicalutamide alone, but insurance denied payment saying that approval would require MO to also prescribe Lupron, or submit a reason why only Bicalutamide is being prescribed. Maybe I can get her to make a stronger case for just the Bicalutamide. Anyway, if insurance continues to deny, a 90 day supply of it costs only $30 with a GoodRx coupon.

GP24 profile image
GP24 in reply tonovatimo

You also need to add 10 mg tamoxifen to avoid breast enlargement.

novatimo profile image
novatimo in reply toGP24

I believe that Bicalutamide does indeed lower testosterone, but that issue aside, I understand that to prevent breast enlargement you can also take 0.5mg Dostinex (Cabergoline) 3x/week. My MO has already prescribed the Dostinex to lower my prolactin levels.

tango65 profile image
tango65 in reply tonovatimo

Testosterone increases when one is in bicalutamide. The gynecosmastia is caused by the metabolization of the excess tetosterone into estrogens (estrone and estradiol). The effects of estrogens in the breasts have to be blocked to avoid the development of gynecomastia. This could be achieved using tamoxifen.

journals.plos.org/plosone/a...

novatimo profile image
novatimo in reply totango65

Thanks for the clarification tango65. Despite increasing testosterone, it's my understanding that some of bicalutamide's side effects are hot flashes and sexual dysfunction, which one might expect from *reduced* levels of testosterone. Can you (or others here) explain why this might be?

tango65 profile image
tango65 in reply tonovatimo

Bicalutmide blocks the androgen receptors in all the body, not only in the cancer reducing or nulyfing the actions of the testosterone. There is more testosterone produced by the testis and circulating in the blood but it can not act because the receptors are blocked.

novatimo profile image
novatimo in reply totango65

So even though the testosterone is increased by bicalutamide, you won't get the healthy benefits of it because the receptors are blocked by the bicalutamide, and you still get the negative side effects of hot flashes and sexual dysfunction, do I have that right?

tango65 profile image
tango65 in reply tonovatimo

I believe the problems with fatigue and depressed mood and even sexual function are less with bicalutamide than with ADT. These are old studies where they compared ADT vs bicalutamide.

pubmed.ncbi.nlm.nih.gov/110...

sci-hub.tw/https://www.karg...

novatimo profile image
novatimo in reply totango65

Thanks!

GP24 profile image
GP24 in reply tonovatimo

After taking Bicalutamide for ten days, my testosterone increased from 14.8 nmol/l to 28.2 nmol/l. I have no hot flashes. Sexual function is reduced due to the treatments I already had. However, if testosterone is not reduced, I see no reason why sexual function should be reduced by Bicalutamide. I think you should just try it, you can stop taking the pills whenever you like.

tango65 profile image
tango65 in reply tonovatimo

Best of luck!!

Shooter1 profile image
Shooter1 in reply toGP24

GP-64----How well will 10 mg tamoxifen work ?? Will it affect already enlarged man boobs??

GP24 profile image
GP24 in reply toShooter1

Allan mentions that 20 mg Tamoxifen can reduce man boobs a bit but I did not notice that. My personal experience is that you should take 20 mg if you take 150 mg Bicalutamide and 10 mg if you take 50 mg Bicalutamide.

depotdoug profile image
depotdoug in reply toGP24

Should indefinitely ask my MO for me to start tamoxifen?? I’ve been on re-start ADT with Lupron 90 day injection s, abiraterone and prednisone since September 2029. Sounds good.

Does Tamoxifen cause Side effect?

GP24 profile image
GP24 in reply todepotdoug

Doug,

the risk for gynecomastia is much higher with Bicalutamide than with Lupron. So for Lupron I would recommend a simple breast radiation.

I did not notice side effects from Tamoxifen. However, when I recommend it to other patients they read the package insert and say: I will not take it. The list of side effects from the package insert is for 40 mg Tamoxifen for women, however. Here is a table with the probabilities of side effects for 20 mg Tamoxifen with Bicalutamide taken from a study by Saltzstein (2005):

up.picr.de/39428329pg.png

depotdoug profile image
depotdoug in reply toGP24

Looks like time to read SE's. Yeh, I'm not on bicalutimide since 30 days dose last Sept prior to 1st Lupron.

Side effects. right now the past week I've had intense indigestion and heartburn. Went to my PCP doctors doctors Friday AM. His exam told me stop taking Any Ibruprofen, like i was taking 4 20mgs once or twice a day. Not good for my stomach or heart. I should know better. With my cardiac issues i'm trying to keep away. Ibruprofen and stomach digestion do not get along. I did start a time release Rx antacid Pantoprazole 40mg. So far not doing any good. I had no idea Prednisone 5mg twice daily can Upset cause heartburn and indigestion and gas.

Boywonder56 profile image
Boywonder56

I am in spartan trial and my understaing is that lupron stops 95 % of t...produced by testes...erleada goes after the other 5% produced in hypothalmus.....may be wrong

..im just a lab rat ...w. .05 psa

I took Erleada for 18 months...I tried multiple times to get off of Lupron, but my doctor said no way. I stopped Erleada because of it’s crazy side effects...that said, it was a miracle drug for me...stopped the cancer progression quickly.

Erleada requires a good insurance plan...it costs about $11,800 per month in the USA. I wouldn’t have been able to afford it without the insurance.

novatimo profile image
novatimo in reply to

What kinds of 'crazy' side effects did you experience?

in reply tonovatimo

“Risk of falling” after taking Erleada for about 14 months, I began to experience syncope when usually just walking...the sudden loss of motor functions made me fall...the last time I fell it was on a gravel driveway and my face looked like hamburger...my doc immediately took me off the Erleada and the side effect ended a few weeks later.

MateoBeach profile image
MateoBeach

Bicalutamide as an alternative to Lupron type ADT does retain testosterone production while blocking the receptor sites to some degree. So the side effects are less (hot flushes) and there is some retention of libido ( though not fully normal levels). It should be combined with dutasteride (1.0 mg/ day) to block the conversion of the testosterone to the more powerful DHT. Yes, breast growth can be stimulated which could be prevented by pre-treatment of breast tissue by radiation. Or by Tamoxifen 10 mg per day.

This regimen may provide cancer control for some time with better QOL for those intolerant of standard ADT.

It will fail at some point when the cancer learns to feed on the bicalutamide rather than being blocked by it. This will probably be recognized by a rising PSA.

This regimen has not been shown to be as good as standard ADT in a clinical trial so it is an extra risk.

I was on this regimen for 4.5 years and quite satisfied with it until it failed and I had to stop bicalutamide and move on to other treatments.

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