Good morning, all. I have updated my profile with my husband's history. But, long story short, he has been on ADT vacation for 13 months following succesful treatment of metastatic disease with Triplet Therapy (six rounds of Docetaxel, Lupron, and first Abieraterone plus Prednisone and then he switched to Nubeqa).
He has had two PSMA PET scans in recent months that show no metastases and only slight activity within the prostate. But, his PSA has slowly been going up and is now 9.97.
He is being given the option between going on Relugolix/Orgovyx with a three pill loader dose and then one pill a day thereafter or Enzalutamide/Xtandi, four pills a day.
We are trying to decide which one would be best. Wondering if anyone else is on a similar path and is on just one of those drugs? I realize everyone is different but wondering in particular about side effects and how quickly PSA comes down of one vs. the other -- and anything else we should be considering.
My husband had a very hard time with ADT side effects after chemo. Not just with the physical side effects - but the mental health side effects were severe and so we are trying to make the best decision we can on this next course of treatment.
Thank you in advance.
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FaithOverFear104
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He still has his prostate and did not have any radiation. He had a PSA of 1041.5 at diagnosis and several metastases. Radiation and surgery were not options in his case.
That sounds like old school thinking for de novo metastatic PCa, i.e., once the horse is out of the barn killing the prostate doesn’t help. Many here say that is wrong and have had our prostates removed or irradiated. The prostate continues to send out micro metastases into the blood stream.
Thanks - his MO does not feel that radiation is an option at this point either. However, we just got out of a meeting with her and she is going to consult with the radiation oncology team and we will see what they have to say. But in the meantime, he is being offered the two options for treatment I mentioned in my original post.
Hi - do you have any studies or further info about removing/irradiating prostate with de novo metastatic PCa? My husband was told the same thing and still has his prostate. His Dx was just over a year ago, so I don't know about "old school" - we consulted at Dana Farber Prostate Cancer group. Would be interested in more info. Thanks.
”My husband was told the same thing and still has his prostate. ” who told him that and why does he still have it?
I don’t remember names of specific studies. I have been guided by my oncologists at MD Anderson. That’s where my prostate was irradiated with 28 sessions of IMRT.
MO at Dana Farber. MO at local hospital (head of oncology). Our pcp. My husband had many bone mets at diagnosis. He was not referred to an RO, presumably because of this.
My husband was diagnosed Jan. 2022 with mets to pelvic lymph node and bones. We are with Sloan Kettering. Initially he was scheduled to meet w an MO and an RO but RO was canceled before we even talked to him. Sloan and two other top PCa specialists told us Triple Therapy was the best and only treatment at the time. No surgery and no radiation, I suppose bc of the number of mets. Whether or not that is now old thinking, I do not know. But I have seen a couple of stories here and there over the years of men who have had surgery and/or radiation after metastatic disease...but I do not recall where.
Faith, it apparently depends on how many mets there are, i.e. not appropriate treatment for high volume/high burden metastases. Apparently 6357axbz had a much lower burden of mets.
Just found on quick search: "Nowadays, radiotherapy of the primary disease is only recommended for de novo low-burden/low-volume metastatic prostate cancer, as defined in the CHAARTED criteria. However, studies on stereotactic radiotherapy on oligometastases have shown that this therapeutic approach is feasible and well tolerated.Oct 10, 2023". My husband is high-volume. @6357axbz, might I suggest you be a little less confrontational.
Thank you for all of the information. I appreciate it but I do not understand your comment about being confrontational. If you took anything I said that way, I apologize - in no way was that my intention. I was just sharing our story from early on in oyr journey in order to say that things seem to be evolving so quickly, as far as treatment recommendations go ...and if there is a chance that today radiation (to the prostate in my husband's case) would be of benefit to someone who has been successfully treated with Triple Therapy, I'd definitely love to know that, so we can further discuss w my husband's care team. I hope that clarifies where I was coming from. Wishing you and your husband all the best.
No, no! - I was replying to @6357axbz - he was being unnecessarily pushy, demanding to know why my husband still had his prostate and who told him he should keep it! Geez. Obviously without knowing the facts. You've done nothing wrong! I checked to make sure I HAD replied to him, not you by mistake. (Each reply made will say "in reply to xxx" right next to the poster's name.). So sorry you thought I was snarking at you. Wishing you two all the best too. - Sooz
Oh boy.... I have a hard time following replies of this forum. Ughhh... But yes- I agree with you!! We come here for information, suggestions and support. Not interrogation about our husbands' decisions. What is the point, really? Sigh. In any case - I do very much wish you both nothing but the best!!
I thought Relugolix and Enzalutamide different classes of medications. My husband has been on orgovyx instead of firmagon and Dr. Sartor put him on darolutamide and switched him to eligard injections instead of orgovyx when he started showing castrate resistance.
Thank you so much. As I understand it, they are different classes but they both work to lower testosterone and getting his PSA back to undetectable is the goal right now. He will only be on one or the other alone - not Lupron or anything else along with it.
I'm currently on mono-enzalutimide. My last 3 month Eligard injection was in October 2023. At my Jan 2024 MO appt, my T was 10ng/dl. I'm coming up on 45 days since my last appt and I do feel better overall which I am subjectively equating to my T returning. enzalutimide will not block T product, just block AR on the cells.I take it at night after dinner. I haven't suffered the more severe SEs, just some mild fatigue, but even that is getting better.
After much prayer I am now taking Orgovyx. so far the only side effect is occasional fatigue and I can't really say it's from the Orgo. I look at it as a pill in this case Orgo can be stopped hopefully ending SE vs injections that may have a longer shelf life in the body. Based on my blood work Orgo so far is starting to drop my psa . You can go on the Orgvyx website - details explain expected results . In my opininion what works for one may not for another. That said many are doing good on Orgovyx and Nubeqa also. Best
I’m taking Orgovyx and Xtandi, both. Not castrate resistant but recent studies showed adding in Xtandi earlier than in past times provided better outcomes. Harvard Medical posted an article on this in December. I’ve found that very regular exercise with lots of weight lifting helps combat side effects. Orgovyx has a lower rate of cardio problems than do the agonists like Lupron.
Thank you for sharing your experience. It is good to know that it is working for you. His MO has not suggested both - just one or the other but we will put it on our list of questions.
It was my introduction to ADT. PSA was 13.4 when I went on it and after first 28 days my PSA was 0.38. I stayed on it for 11 months the MO advised a vacation. My vacay has been 14 months and counting and PSA during that time has slowly elevated to where--as of yesterday--it is only 0.74.
Side effects were minimal...mostly hot flashes--usually nocturnal.
Thank you so much. This is very helpful. I am happy to hear that it is working well for you. Thank you also for the well wishes. We appreciate them very much. I wish you the same.
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