Questions on Casodex (bicalutamide) and Orgovyx (relugolix)

Posted by cpblanco @cpblanco, Sep 24 8:55am

My husband has been put on both medications. Cassodex once a day for one month and Orgivyx for 6 months, also once a day. Has gleason 10 score for 2/3 of the prostate, some seminal vesicles involved and tiny cancer in lymph nodes. After the 6 moths, radiation. He only started on the Cassodex yesterday. Can someone that is on both of these meds tell me how they feel and what the side effects are?

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This is a little unusual. Casodex is a low level ARPI drug that works for some people. It is usually used before somebody goes on Lupron or Eligard To prevent a flare when you start the leuprolide drug. It is unnecessary when you are on Orgovyx. I do know people that have used it as their only drug to keep their cancer under control. One guy went on and off Casodex for five years and it kept his PSA down, Until he had to move On to Darolutamide.

In my case, I was on ADT (Lupron) And My PSA started rising, Meaning I became castrate resistant. My oncologist added Casodex, but it didn’t work very well. My PSA kept rising slowly for a year until I was put on Zytiga.

In your case, you should almost definitely be on an ARPI like abiraterone or One of the lutamides. I suspect this is going to happen pretty soon.

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@jeffmarc is correct. This approach is at-best "unusual", and at-worst, completely backwards from the order or sequence of what is normally prescribed.

Typically, the Casodex (or if metastatic, Nubeqa=Darolutamide), is taken immediately after initial diagnosis or recurrence, in order to quickly stop the influence of existing testosterone presently within the body, by binding to cellular (surface) receptors. Lupron (or Orgovyx and/or others), are then typically administered shortly thereafter (usually within 2-4 weeks), to stop the body's normal production (the "biosynthesis") of any further testosterone. Thus, they have completely different mechanisms, one acting rather immediately, the other a bit more delayed or drawn-out.

However, that said, there are undoubtedly numerous men here on this forum, who have indeed taken both of these ADT meds (Casodex and Orgovyx) at one point or another, who can give you an idea of their respective "individual" side effects, but it is unlikely that they will have been on both medications simultaneously. Note: Orgovyx and Nubeqa appear to be taken together rather frequently, but Orgovyx and Casodex, not so much).

Anyway, this is just my own personal view, but I hope that it helps. Good luck!

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Supposedly, the Orgovyx is rapidly shutting down your body's testosterone factory, the Casodex is immediately blocking any leftover testosterone already floating around in your blood from reaching the tumor. The Cassodex is only for one month and then the Orgovyx for a year. Then radiation. They can't do radiation now because the tumor is a high-grade Gleason 10 and is sitting right against the anterior rectum, and radiation cannot be done until the tumor has shrunk. This is at the MIami Cancer Institute so I hope they know what they are doing.

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Profile picture for cpblanco @cpblanco

Supposedly, the Orgovyx is rapidly shutting down your body's testosterone factory, the Casodex is immediately blocking any leftover testosterone already floating around in your blood from reaching the tumor. The Cassodex is only for one month and then the Orgovyx for a year. Then radiation. They can't do radiation now because the tumor is a high-grade Gleason 10 and is sitting right against the anterior rectum, and radiation cannot be done until the tumor has shrunk. This is at the MIami Cancer Institute so I hope they know what they are doing.

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@cpblanco Yes, I believe most all of this information is correct, but it is my understanding that the duration of Orgovyx treatment, is dependent on how aggressive the cancer is (Gleason score, etc.). So with a high Gleason score of ten (10), a single year of its use sounds to me like it might be a bit light (or short), but then, I am no doctor. I would simply suggest looking into that subject (duration of Orgovyx for high-risk), a bit further. By example, I am a recurrent patient after 8-years, with a Gleason score of 9 (later reduced to 8), and I've been told by multiple oncologists/urologists that I'll likely be on Orgovyx for a minimum of 3-years, regardless of what my PSA level is at the time.

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Profile picture for Too-Many @toomany

@cpblanco Yes, I believe most all of this information is correct, but it is my understanding that the duration of Orgovyx treatment, is dependent on how aggressive the cancer is (Gleason score, etc.). So with a high Gleason score of ten (10), a single year of its use sounds to me like it might be a bit light (or short), but then, I am no doctor. I would simply suggest looking into that subject (duration of Orgovyx for high-risk), a bit further. By example, I am a recurrent patient after 8-years, with a Gleason score of 9 (later reduced to 8), and I've been told by multiple oncologists/urologists that I'll likely be on Orgovyx for a minimum of 3-years, regardless of what my PSA level is at the time.

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@toomany now that you say that, I remember the doctor saying 2 years. What are your side effects, if I may ask?

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Profile picture for cpblanco @cpblanco

@toomany now that you say that, I remember the doctor saying 2 years. What are your side effects, if I may ask?

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@cpblanco Yes indeed, you are absolutely free to ask, no worries whatsoever, and I sincerely apologize if I misled you somehow, but I am not currently on Orgovyx.

I received notice of recurrence about 9-months ago, and a PSMA-PET scan in mid August identified where the recurring cancer is located, but over those 8-weeks since, I have not yet been able to secure a sound, reliable, trustworthy treatment regimen (i.e., valid prescriptions for any ADT medications), from more than seven (7) different Urologists and Oncologists in five (5) different facilities and four (4) different states!!

The VA simply will not approve Orgovyx, regardless of recommendations from their own Medical Oncologists, and despite their very own local and Call Center licensed (PharmD) Pharmacists telling me otherwise. Similarly, Blue Cross/Blue Shield (BCBS) will apparently not approve Nubeqa (Darolutamide). I've honestly never seen anything quite like it! Clearly, a patient's health is not their principal "driver" - it's the money! The irony is, I'm told that the VA bills BCBS directly for many (if not most!) of the prescriptions that the VA fills (!!), and frankly, given these absurd, profiteer-based denials, I would think that they'd have serious exposure to some rather formidable lawsuits.

Anyway, continued best wishes in your journey forward. I'm confident that some others will pipe-in for you here soon. 👍

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I had a Gleason score of 9 and was prescribed Orgovyx for two years, but I stopped taking it after 17 months due to the many side effects that severely compromised my quality of life. I suffered from knee pain—making it impossible to stand up from a chair normally—as well as neuropathy, fluid retention in my feet, tendonitis, and muscle pain. Fortunately, some people experience few or almost no side effects, but my experience was a different story. I feel much better now, and the side effects have disappeared since I stopped taking the medication in June of this year.

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Thank you, this is super helpful. If you don't mind my asking, when did you start feeling the side effects? What happened with the cancer? Did the Orgovyx work? did you have to have surgery or radiation? I am glad you are feeling better and have a good quality of life!

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After one month on Casodex and Orgovyx his PSAwent from 6.98 to 0.48 and testosterone from 686 to 13. No side effects from either drug. He has an appointment with the oncologist on Monday. We’ll see what he says.

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