Just left MO. I will be getting to stop Orgovyx in a few months after being on for two years. I started abi and prednisone five months after Orgovyx and will have to continue on those until I reach the two year mark. Will my testosterone start rising just by stopping Orgovyx?
getting off Orgovyx: Just left MO. I... - Advanced Prostate...
getting off Orgovyx
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despurato
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Please do PSA every 4 week.
I really don’t what the protocol will be. I go to MUSC in SC. They are just now letting me do the bloodwork here and a telehealth visit every other visit. It’s a four hour drive for me. This is a blessing in itself. I am also getting treatment for Bladder cancer there as well under another physician.
It usually does. Not guaranteed though.
• Relugolix (Orgovyx) is an orally administered GnRH receptor antagonist that works by blocking the pituitary gland from producing luteinizing hormone and follicle-stimulating hormone, thereby reducing the amount of testosterone the testicles can make. If the GnRH antagonist is discontinued, testosterone usually starts recovering within weeks.
T recovery
Thanks for the chart. Just getting rid of the hot flashes will be great. I was so excited I didn’t ask any questions.
If you ever have to do ADT again, look into transdermal estrogen. There are also some drugs you might be able to use to reduce hot flashes. But talk to your MO. And don't take oral estrogens. Heart attack risk.
They aren’t to the point that I need anything for them. They are just aggravating. Won’t miss them but my better half has to make a comment about them when I have one around her. Lord, I know there’s a chance I might have to go back on them one day but maybe I will be one of the lucky ones.
Here's hoping you don't need ADT again.
I was wondering what the treatment duration was for this dataset. Short or long term ADT or mixed?
I have been thinking that since T recovers much more quickly with Orgovyx, we have effectively 3 months less T suppression. And since virtually all trials determining optimal ADT treatment duration used agonists, maybe we should add a couple of months of treatment to be equivalent when taking Orgovyx (I'm on Orgovyx).
The HERO trial had guys on Orgovyx for 48 weeks. Looking at the outcomes, it is a no-brainer to me that if you need to do ADT, Orgovyx is the way to go if you can get it authorized. I use Orgovyx when I do ADT.
Thanks I didn't realize it was from Hero so 48 weeks of ADT sciencedirect.com/science/a.... After two years of treatment recovery will probably be longer.
💯% agree that Orgovyx should be first choice but some doctors (mine for example) are reluctant because of (perceived) lack of "long term" data.
I was the first patient on Orgovyx at my hospital and the other two I consulted had not used it but were open to it (it was only approved here 4 months before).
Some of that time is made up on the other end because Orgovyx is so much faster to lower your T to castration levels.
Yes, you gain a month upfront. If you are doing long term ADT it is not so relevant, less than 10% difference. On 6 months of ADT it could be more important.
Edit. I asked perplexity about this (deep research)
But isn't he still on abi? Doesn't it suppress T?
Abi suppresses T and, for many guys, can be used as monotherapy for ADT. Depending on your cancer, you might benefit from double hormone blockade. Drops androgenic activity down even lower. The downside is side effects.
His MO should know which is better for him at this time.
He asked, though, if his T would rise after stopping Orgovyx even while continuing abi.
Yes. And I wasn't thinking about the AA. You corrected me. I was in error. I misread what the question was.
His T will likely not rise since he is on AA. Best to discuss with his MO about treatments, T rise, etc.
In my case, the T went down rapidly when I started Relugolix but after 2-3 months it began a slow rise. I have now been taking double dose of Relugolix for 3 weeks at the request of my MO who wants to see if it will have an impact or not. I have blood test scheduled for next week March 12. I guess I'll find out then if the double dose kept the T down or not.
well, Abiraterone are not really suppose to stop testicles from producing Testosterone because it has another form of inhibition. So it it might be possible that you testicles starts producing Testosterone.
You’re actually one of the first I’ve seen and heard doing the other way around; stopping Orgovyx first and then stopping Abiraterone after that. Actually very interesting and did your doctor / medical team give you information on why they think this is more beneficial or is it only a time perspective, 2 years of Orgovyx and 2 years of Abiraterone.
Anyway, please keep us posted on progress and hopefully the cancer beast is really down in total submission and gone ones and for all 👍😉😇
The first doctor I had just put me on Orgovyx and with the bladder cancer as well I figured I needed to get to a NCI facility so I have a team now and the first thing they done was add the abi and prednisone. Doing the BCG for bladder.
I was on ADT (tE2). My MO added AA. I stopped the ADT and didn't stop the AA for a couple of years.
Admittedly, I'm a very unusual case.
My experience after 12 months on Orgovyx and stopping,,,
Within the first three weeks, noticeable improvement in the fatigue and muscle and joint stiffness.
Hot flashes, like fat cells, stubborn, weren't noticeably different until around the three-month point. Same with genitalia shrinkage and weight gain.
T recovered to 300+ in the first three months, 400+ at six.
Kevin
Clinical History
I don't think it will recover, at all, until you stop both, from perplexity.ai:
Based on the available information, it is unlikely that the man's testosterone levels will return to normal or rise significantly after stopping Orgovyx (relugolix) while continuing abiraterone.
Abiraterone is capable of suppressing testosterone production effectively on its own. It decreases testosterone production both systemically and locally. When used in combination with androgen deprivation therapy (ADT), abiraterone has been shown to maintain castrate levels of testosterone (below 50 ng/dL).
While Orgovyx is a potent testosterone-suppressing medication, discontinuing it while continuing abiraterone should still maintain low testosterone levels. A study mentioned that abiraterone alone was capable of working effectively as ADT, with patients achieving full testosterone suppression (total T less than 5 ng/dL) during treatment periods.
Unfortunately I do not think that your hot flushes will disappear either, from perplexity.ai:
If a man stops taking Orgovyx (relugolix) but continues abiraterone, his hot flashes are unlikely to disappear completely. Both Orgovyx and abiraterone suppress testosterone levels, which is the primary cause of hot flashes in men undergoing hormone therapy for prostate cancer.
Hot flashes are a common side effect of both medications, as they lower testosterone levels significantly357. While discontinuing Orgovyx might slightly reduce the frequency or severity of hot flashes due to its direct mechanism of action, continuing abiraterone will likely maintain testosterone suppression and the associated symptoms.
Thanks. I thought about did suppress T but wasn't sure.
True! Since he is on Zytiga also and isn't stopping that, his T will not recover.
Zytiga is sometimes used as sort of a combined ADT and ARSI therapy.
I was under the assumption that abi just worked to suppress the T from adrenal gland. And, Orgovyx went for the testicles?
Abi stops biosynthesis in adrenals, testes, and cancer microenvironment. It works by inhibiting the enzyme CYP17A1.
Orgovyx stops T production in the testes. It's a GnRH antagonist.
Well I got excited for nothing but, I have a light at the end of the tunnel!
Outside of loss of libido do you have side effects from your AA/orgovyx therapy?
Not really. I’m also getting bcg so I’m going to say that contributes to some of my fatigue but overall I’m doing pretty good.
no I don’t. Thank goodness
probably will not rise. Two years on both meds and only stopping one and being 72 years old is the mix. My friend went on a combo for about 13 months (or more?), stopped both six months ago and had no rise in T as of yet.
Frankly, dropping one and leaving the other does not make a lot of sense to me, I asked ai and this is what the answer was:
"This approach of discontinuing orgovyx while continuing abiraterone for an additional 6 months is somewhat unusual and doesn't fully align with standard treatment protocols. Here's why:
Orgovyx (relugolix) and abiraterone are typically used in combination for advanced prostate cancer treatment14.
The STAMPEDE trial, which is often used as a guideline for treatment duration, recommends 24 months of combined therapy for locally advanced prostate cancer46.
Discontinuing one medication while continuing the other doesn't follow the typical treatment pattern. Usually, both medications are either continued or discontinued together6.
Abiraterone is generally most effective when used in combination with androgen deprivation therapy (ADT) like Orgovyx27.
The decision to stop or continue treatment should be based on individual patient factors, including PSA levels, side effects, and overall response to treatment49.
Given these considerations, it would be advisable for the patient to discuss this decision further with their doctor. They should ask about the rationale behind this approach and whether it's based on specific factors in their case. If there are concerns, seeking a second opinion from another oncologist specializing in prostate cancer might be beneficial.
I added the bolding. It certainly may be appropriate for you, or it's a doc that doesn't have much of a clue and I'm sad to say, there seems to be a fair amount of them. The numbers are references. To access them ask your question at perplexity.ai or one of the other ai's.
That’s certainly something to ask about? I’m going to the only NCI institution in the state of SC. Surly they have their ducks in line. And if it will help me I have no problem staying on the Orgovyx until the two years is up with the abi and prednisone.
I would ask my MO for clarification.
One reason they might desire to stop orgovyx before Zytiga is T recovery. T recovers in about 5 weeks post Zytiga (recovery of cyp17 enzymes). Orgovyx T recovery "might" be longer.
But I would ask my MO. Good catch. Double hormone blockade is usually the preferred approach.
Sorry I can't comment on your inquiry because I dropped out of medical school to become a Chippendale dancer. Give em hell anyway!!!
Good Luck, Good Health and Good Humor.
j-o-h-n
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