How many have made the change and how did it work for you? After 4 years I’m tired of the injections. I am also on Xtandi.
Changing from Firmagon to Orgovyx - Advanced Prostate...
Changing from Firmagon to Orgovyx
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I havnt made the change but I am starting ADT again in a month or so and really thinking about it. I don’t want to make the change since firmogon worked for me well the last two times and I don’t want to rock the boat.
Same here on rocking the boat.
Orgovyx has the same mode of action as Firmagon. You can just change from injections to pills.
I changed from Firmagon to Nubeqa & would go back to Firmagon any day because I forget to take pills. I might add Orgovyx is not available here yet.
How are the side effects for you comparing between Firmagon and Nubeqa?
Firmagon is gonadotrophin releasing hormone (GnRH) antagonist and Nubeqa is Androgen Receptor Signaling Inhibitor.Orgovyx have same mechanism as Firmagon.Nubeqa is totally different.
I'd like to stop the injections as well...has the cost come down any? Last time I checked it was about $600 per month
I pay nothing, not for Orgovyx, nor for Abiraterone. I still work and make about $60k total but put all that I make from my job into a 401k, dropping my taxable earnings to about $36k which is within the limit of some program, ask you doc (USA). Also, Medicare now has a $2000 cap so if you pay for four months, after that = zero. Aries29 commented that Orgo is not available in Oz yet which seems odd. It is sold (Orgovyx = Relugolix = Xelucip) in India for $105/30 US$. Before this no-cost program I'm on, back in December, I was in Mumbai for some classes and bought some, it's made by Cipla, a very reputable company.
Would you consider bilateral full orchiectomy instead of firmagon (degarelix) ADT monthly injections?
Since T levels will most likely never be normal you might consider orchidectomy. Simple day procedure and no complications. No injections and daily pills. If you to increase T level take T injections!
Exactly. Same logic here. After 7 years on degarelix ADT injections I don't really believe that my testosterone would rebound even after stopping ADT. But I am not sure 100 %. Most probably will not rebound plus I don't really believe that I would risk trying that. I just know that people who are still alive after 20 plus years never had an ADT holiday. I am not a doctor nor I have any experience but my personal belief is that if you have an ADT drug holiday you are exposing yourself that your Mets may start to work as spreading the cancer. Therefore I believe that the best is to keep testosterone at castrate level. I see numerous people here getting a visible metastasis and after SBRT that particular visible metastasis the PSA again dropping. I believe if you have an ADT drug holiday that you may develop multiple visible metastasis and ones you have multiple visible metastasis discovered it is simply impossible to SBRT them all and your PSA will never drop to very low. Again it is only what I think. I don't really know for sure but by watching other people having a metastasis and successfully radiating them and achieving a very low PSA that is a success and probably a result a castrate level of testosterone.
I switched from 3 month Lupron injections to Orgovyx. The side effects were mostly the same, except for some cognitive aphasia. It freaked me out a bit being that I was only 60 years old. It was enough such that my Oncologist suggested I get an MRI to check for strokes.
My husband changed after 2 monthly injections. The injection did work for him but the side effects were too much. He is on Orgivyx for 2 months now and the side effects is day & night compare with lupron according to him.
I hear about less side effects with Orgovyx vs injection but it has to be psychological, since side effects are driven by T suppression, which they achieve in equal measure.
I did every 90 day Lupron shots for 18 months, before Orgovyx was available. If it were me now I’d welcome it. I can’t imagine why anyone would prefer that, Firmagon or any other injectable to pills.
Unless you think (or know) that you could/would forget to take the pills. I can’t identify with that, but for those susceptible it’s a very good reason to avoid it.
I believe that the problem with lupron is that your testosterone could fluctuate and with degarelix it is low and assume that your testosterone for any reason goes up your next degarelix injections will hammer it down. I believe that I read it somewhere that with lupron if the testosterone for any reason goes up a little bit your next lupron injection will actually elevate your testosterone first and then push it down. That is very unwanted I can't recall why exactly but I could ask ChatGPT for brainstorming. What I know is that my MO prefers degarelix. It is especially unwanted if you have like me metastasis in your spine and neck. There are other reasons but I can't recall. Sorry. Of course you and me we are not in a same league. I am polymetastatic with distant spread why you are not.
Q. What's are the other reasons that you don't want a fluctuations in testosterone? Is it to do with some side effects like brain health etc.
A. Yes, avoiding fluctuations in testosterone levels during treatment for prostate cancer is crucial not only for controlling the disease but also for minimizing side effects that can significantly impact overall health and quality of life. Here are the reasons why steady suppression of testosterone is important:
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1. Prevention of Tumor Growth
Prostate cancer is usually androgen-sensitive, meaning that testosterone fuels its growth.
Fluctuations in testosterone, such as the surge (flare) caused by GnRH agonists like Lupron, can briefly stimulate cancer cells. This is particularly dangerous in metastatic disease, as it could exacerbate symptoms or lead to complications, such as:
Increased bone pain.
Spinal cord compression from metastases.
Worsened urinary obstruction in advanced disease.
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2. Brain Health
Mood and Cognitive Function: Testosterone plays a role in mood regulation and cognitive function. Fluctuations or prolonged suppression can lead to:
Depression or anxiety.
Brain fog or memory issues.
Difficulty concentrating.
These effects are more pronounced when levels fluctuate rather than remaining stable.
Neuroprotection: Chronic low testosterone has been linked to an increased risk of neurodegenerative diseases like Alzheimer’s or Parkinson’s disease, although the relationship isn't fully understood.
---
3. Cardiovascular Health
Testosterone fluctuations can impact vascular stability and contribute to:
Increased blood pressure.
Worsening cholesterol levels.
Higher risks of cardiovascular events like heart attacks or strokes, particularly in the initial flare stage.
Prolonged, stable suppression of testosterone is less likely to destabilize cardiovascular health.
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4. Bone Health
Testosterone plays a key role in maintaining bone density. Sudden changes can:
Accelerate bone loss (osteopenia or osteoporosis).
Increase the risk of fractures, especially in individuals with bone metastases.
---
5. Metabolic Side Effects
Testosterone fluctuations can worsen metabolic dysfunction, leading to:
Insulin resistance or increased risk of diabetes.
Fatigue and muscle loss.
Weight gain, particularly visceral fat, which can exacerbate other health conditions.
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6. Quality of Life
Stable testosterone suppression minimizes the physical and emotional rollercoaster associated with hormonal fluctuations. This includes:
Better energy levels.
Fewer hot flashes.
Improved emotional stability.
---
Why GnRH Antagonists Help
Drugs like degarelix or relugolix suppress testosterone directly without causing the initial flare, offering a smoother and safer hormonal transition. This is particularly advantageous for patients with widespread or critical metastases.
---
Conclusion
The goal of consistent testosterone suppression is not only to prevent prostate cancer progression but also to protect other aspects of your health, including brain function, bone strength, and cardiovascular stability. Discussing the risks and benefits of different hormonal therapies with your healthcare provider can help ensure your treatment plan addresses both cancer control and overall well-being.
ChatGPT said
I have not heard of anything like that with Lupron, only the initial flare, which is deliberately mitigated with the addition of bicalutamide or similar. Mine was <10 ng/dl consistently for the entire course of Lupron.
I can’t imagine why anyone’s testosterone would have ‘go up a little bit’ on Lupron if no cycles are missed or late, but if your MO prefers Firmagon well there you go. Hopefully you don’t get any of the injection site pain and swelling it’s known for.
It's not merely psychological. I just started Orgo + Abi, and it was quite the battle to get OK for that route, every doc was: Lupron + IMRT. I spent many hours reviewing different studies and one listed adverse effects as a table, and others talked about adverse effects comparing Lupron to Orgo and I remember two things that stuck out: Less cardiac effects specifically, and faster T rebound. I consulted with Alicia Morgans of Dana Farber (Boston) who said: "Your plan = (Org + Abi + IMRT (limited) + brachy) would be the best for long term survival."
I've been on Org + Abi now for 3 weeks only, adverse effects were Lightheadedness, dizziness and headache (but that stopped in a week). Now xerostomia (dry mouth) at night, hot flashes (mild, only at night), no cognitive effects . Occasionally some foods taste bitter. Maybe it'll get worse over the months? I hope not. But my take-away was Orgovxy beat Lupron, hands down.
Gleason 4+4, extraprostatic extension (by about 5mm), no detectable mets on PSMA, I'm 75 and work as a RN 3 days/week, and haven't had any issues there (though that was, and still is a worry).
It’s so early for you that hopefully these sides are transient, or even related to something else. I would look carefully at any other changes that could be a cause. Maybe there aren’t any. Likely you adjust well.
The faster T recovery upon cessation is one of the best features of that drug, especially if you are on a finite course of it or are invested in taking a vacation at some point.
If Alicia Morgans told me to soak my head in pancake syrup every morning I would do it gladly. That is, I hold her in the highest possible regard..
Well, I went the other way... From Orgovyx/Relugolix to Degarelix/Firmagon injections.
Why?
Because while using the Orgovyx I experienced one of its side effects, which was definitely compounded by using Metformin that had the same side effects... I'll explain.
Is weird because I began using Orgovyx right after it was approved by the FDA here in the U.S., I had been watching it closely. But in the beginning they hadn't identified bowel movements as a side effect. Later they did and I'm sure it's noted now.
In any event, I was at the time experiencing a more frequent emptying, say 8-10 times per day. Not loose all the time, just many!
Well, arounf the same time, my T krept upward, as did my PSA!
Thought was a metabolic issue that the pills were not dwelling long enough and basically passing through. Stopped the pills, went on Degarelix, that stabilized my PSA and T... Added Darolutamide then and dropped it all!
Ok, so some assumptions can be made, first is that I became Resistant! Well that would be interesting in less than a year... So I rejected that thought. But the bottom line was the pills weren't working as they should, so what was the problem. Well, it was the pills silly! By the way, once I stopped the Orgovyx my Bowel issue also subsided. So, without repeating the experiment to validate it, I would say the use of Metformin along with Orgovyx, both having noted Bowel Frequency issues, when combined can pretty much assure it happening, lol. Well, for me anyways!
Now as for the Degarelix, yeah, it's getting Old and I've thought about the Orchiectomy a few times lately. Have had no T for the last few years, get along fine without it, so why not make it easier, right? Is a good question to ponder! As noted, can always get T if needed! For me and my case, probably not! Right now I've been in the "If it isn't broke, don't fix it" mode! Hahaha, everything is working, so why mess with it! Anyways...
Good luck in your decision! Remember, the great thing about "Pills" is that it can be quickly reversed. If you don't like what's happening you can just stop taking them. Unlike injectables whereas you'd need to await them fading out...
Regards
Well you know any of us can have unusual sensitivity to a drug, and if it were me I’d do exactly as you did.
Sometimes if I get a side effect I look at my tray of pill bottles and try to figure out the culprit. Generally I then give up and take them all anyway.
Good luck with your decision on the orchiectomy. As you know some men would never even consider it, for others it was an easy choice and they couldn’t be happier.
"How many have made the change and how did it work for you?"
I have not made the change, as I started on Orgoxyx and then 2 months later added Abiraterone+Prednisone. For the 2 months on Orgovyx alone, I notice no side effects. That is why I chose it.
Started out and still on Orgovyx and Nubeqa. Only mild brief hot flash . may once a day. Use a clear pill organizer keep it at the table in visable site. so far only one minor skip dose on orgo corrected with a double as they state to do. Think the half life is 12 hours. As long as it keeps doing it's job I'm ok with it over any injection.
I've been on lupron, firmagon, and orgovyx. It was a no-brainer switching over to orgovyx. No terrible injection site reaction like I'd get with firmagon, lupron caused heart arrhythmia. The other side effects common with ADT seem to be the same or less with orgovyx.
Orgovyx keeps my testosterone levels at approximately 10 or below, taking a pill a day is no big deal, there are no drug interactions that I have experienced including with metformin which I also take.
Have yo checked the cost in Canada ? Both are approved and yoou get 43 % advantage with your US Dollar . $ 1 USD = $ 1.43 Canadian dollars . PLUS . Drugs are much less expensive in Canada . I know , and you probably know , dozens , hundreds , yes thousands of people who buy from Mexico or Canada .
Good luck .
A followup Re : Canadian drug purchases .
Contact CXConnected Pharmacy . They serve the majority of American customers . Your doctor can FAX a prescription to the pharmacy -- they do the rest .
Check out the Canadian price for fun . See what you save .
I am changing from Firmagon to Orgovyx. I started Firmagon injections in august 2023 .Last, 19th shot ,I got yesterday 13.2. Im gonna start Orgovyx next month.Not sure if starting dose 3 pills or direct 1pill.Still waiting confirmation/info.
I am also in Nubeqa.(+Tamsulosin+D3+calcium)
You could comfortably continue with one oil because you are already for some time on Nubeqa, but as already said you shouldn't have any problem to get a confirmation from your medical oncologist. Just send an email to him or his secretary?
I started out on orgovix to begin with and only experienced the standard side effects from lower testosterone. Nothing additional. I have now been off the pills for approximately 9 months. Testosterone has recovered quickly as was advertised and from discussions with others in support groups yy side effects were much less than if I'd received injections. I also received financial assistance from the manufacturer. Zero regrets.
unlike yourself I’d as soon stay with injections as I already take a ridiculous number of pills…..additionally the cost of injections is picked up by part b ….i can’t afford any of the newer oral meds that fall under part d.
I was on Lupron for 18 months. I did okay. Hot flashes, lethargy. Then, I got a 6 month vacation. Just started feeling great again, and was put on Orgovyx. I've been on Orgovyx for almost 3 months now, and the side effects (for me) have been much milder than with the Lupron. I still have the occasional hot flashes. But, I have been hitting the gym almost daily and feel pretty good. On the other side, my PSA is not as low as it was when I was on the Lupron. Perhaps the Orgovyx is still ramping up.
Bottom line for me. I prefer the Orgovyx as far as how I'm feeling physically and mentally. It may change as I stay on it longer. We'll see.
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