I’m about to be changed over from Degarelix (Firmagon) to Prostap (Lupron) in a couple of weeks because 3 monthly injection is more convenient. I’ve read that Degarelix is better though.., maybe I should ask to stay on that? Or I’m wondering about asking to switch to Orgovyx instead. I’ve had a quite a bit of pain from injection site and get knocked out for a day or so after injection. Have read that Lupron also knocks people about a bit after injection.
They also just started me on Enzalutamide, but a few studies seem to suggest that Daralutamide may be better. I’m seeing my Oncolgist on Friday, should I ask about switching both?
(I’m Gleason 7 (4+3), HSmPC - starting PSA 530 came down to 0.88 in 6 weeks on only Degarelix + switched to vegan diet and increased exercise intensity + various supplements all in bio)
Any ideas/thoughts? Thanks.
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Broccoli24
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Regarding Firmagon, I have stayed on this GnRH antagonist. The pitch from the doctor is that Lupron is more "convenient".
Doesn't seem like the best criteria to make a choice between two ADT drugs. And they are different - Lupron is a GnRH agonist. That's why after my initial period on Firmagon/Degarelix, and quite a bit of reading, I decided not to switch.
As for Firmagon injection site pain, the competence of the nurse is important. I've had now I'm about 30 months of injections.
Thanks, yes it felt like it! My second F injection was mashed down by the nurse - ‘because some people don’t like the bump’… wow, a very uncomfortable couple of days. The last one, a different nurse was much more gentle, and really took her time. Better, still quite painful. Is it normal to feel particularly tired the days afterwards? I’m hoping to avoid that effect with the Orgovyx.
For the first year and a half I had a fever for about 36 hours of 1.8° C. And shivers. And by solution to that is to sleep for 10 to 14 hours with three blankets on me. And then the second day was was better and although I would be tired for a couple of days, it was back to normal including my part-time work.
But I never had hot flashes. And as long as I had a competent nurse (I always have the same one now) the injection was generally fine.
You can read the instructions from Ferring, the manufacturer of Firmagon, about the 20 steps that have to be done correctly for the injection. The injection must be in fat and not into even a little bit of muscle. There's a huge difference between a proper injection and a sloppy one.
And as I mentioned in my previous note, after some research I decided to stay on the GnRH antagonist.
Thanks very much, I’ll read up on the proper steps… do you feel comfortable advising the nurse? I’m English, so get very awkward about interfering with their job. But I did this week… the pain is not worth it.
I’m sorry to hear that your reaction was like that… I think I might have to resign myself to it too… I spent most of yesterday in bed feeling rotten. Damn, I was hoping it wouldn’t have so much of an effect. (Obviously a small price to pay for keeping us alive!!)
Don't forget that "the Lupron people" - and this is anecdotal of course from people who actually have the hot flashes - seem to experience a lot of hot flashes. I have never had this. This is just my own single data point of course.
I don't get hot flashes either. Occasionally a warm feeling but nothing bothersome.Switched from Eligard to Orogovyx for about a week now. I'll see if the experience is the same. Knock on wood but I'm not having any Xtandi SEs neither.
I have not felt comfortable directly advising the nurse. I have done what I could to slow them down. It's unnerving to hear that the nurse has just now learned how to do an injection, during a conversation in the hall with another nurse.
Yep, I had that experience… but I overcame my discomfort and asked them to take it very slowly. There are so many steps to get right, I don’t fell I can micro-manage them all. I wonder if self- administration might be preferable… or another point on the side of the oral route with Orgovyx!
I have been excited about Orgovyx (a.k.a. Relugolix) but I fear the consequences of missing a dose. This has been highlighted by Tall Allen several times.
And as for injecting oneself there have been people here on the Forum (oddly they mostly seem to be from Australia) who do their own injections. In one case it's a fellow who travels for business.
When I had Docetaxel chemo, my wife did my anti-infection injection, which saved another big chunk of time going to a clinic, but that wasn't as tricky as Firmagon.
All ADT accomplishes the same thing - they lower testosterone. Firmagon and Orgovyx do it faster, but must be used every month (Firmagon) or every day (Orgovyx). Even a missed day or a few days late for a shot may allow testosterone to reactivate your cancer. Medicines like Lupron (called GnRH agonists) have prolonged activity and may be taken monthly, or every 3,4, or 6 months. They initially cause a flare of testosterone followed by shutting down of all testosterone production (negative feedback). Often, patients start with a couple of Firmagon shots to prevent T flare and then move onto Lupron. Orchiectomy is one and done.
There has never been a prospective trial comparing second-generation hormonal agents. Retrospective trials have favored each of them, depending on the trial, which is why we should never make decisions based on retrospective trials.
lol… you’ve had a look at my bio. Well, it early days for me and after seeing a close friend do very very well with his cancer through diet etc I can’t ignore it. Of course I want to do it without compromising SOC.
Yes, with the ADT possibilities; Firmagon, Orgoyvx & Lupron I’m hoping to find a solution that reduces the pain I’m having at the injection site, and the flowing days of intense tiredness. I hope some of the guys here with experience might point in one direction or another. I think I’d be ok about not missing taking a pill with the oral route. But point well made.
Interesting re second gen. I thought a few trials had suggested that Darolutamide might offer extended PFS/longevity. Also, I may be wrong here, but as Enza crosses the blood brain barrier it may be more likely to induce ‘mental fog’ - which seems like a gentle way of saying some form of dementia. I’m already feeling pretty foggy two months in.
Injection site reactions to Firmagon tend to diminish after the first 2 months when double doses are given.
"as Enza crosses the blood brain barrier it may be more likely to induce ‘mental fog’ - which seems like a gentle way of saying some form of dementia." No. The only risk of crossing the blood-brain barrier is seizure risk in those who are prone to that. It was said that because darolutamide doesn't activate GABAA, it may cause less fatigue. But fatigue is a symptom of low T, and it is unclear that any second-gen hormonal causes less fatigue. There are no prospective trials that have found that any of them cause dementia.
I had a double dose only the first time, then single shots of F. Good to hear if those effects diminish.
Re Enza vs Daro…
‘In a network meta‐analysis of 15 trials that included 14,732 participants, NHAs, especially enzalutamide, increased the risk of cognitive impairment, followed by apalutamide and abiraterone. Darolutamide (DARO) had the lowest risk of cognitive impairments.’
‘Conclusions: The study did not show a difference in preference between the two treatments. In men with mCRPC, darolutamide was associated with a clinically meaningful benefit in episodic memory and less fatigue compared with enzalutamide.’
You are being duped by retrospective studies. It's a fallacy attributable to "selection bias" and explains why retrospective studies are seldom duplicated in prospective trials.
A prospective randomized trial takes a random sample of patients, treats them with some treatment and observes what happens to them. Their reaction is compared to similar patients (the control group) who did not get that treatment. A retrospective study means that one is looking back at non-randomized patients and trying to determine what caused their illness. Retrospective studies do not tell patients what would happen if they got that treatment, because patients were chosen to get that treatment because of some unmeasured confounder. For example, you may have asked your doctor for some treatment based on the experience of a family member with that treatment. Only prospective randomized trials (Level 1 evidence) can determine cause-and-effect.
Thank you, that clears things up a bit. Though don't new discoveries sometimes come from the observations around what has happened to a selection of patients, prostate cancer say, and then those that happen to be diabetic and being prescribed something that works for that happen to have a longer progression free period in their prostate cancer - hence Metformin being used by some oncologists. My oncologist, who is highly regarded in the UK, has offered to prescribe me Metformin. I hear you on the determination of cause and effect, but sometimes you see an effect, the cause is unknown, so it would be a sensible gamble to pursue the effect... if you were fairly sure that no other major side-effects were likely.
Science thrives on testing hypotheses. There are lots of wrong hypotheses for every right one. Those retrospective studies are only for hypothesis generation. They are published for the benefit of other researchers, not for patients.
Your example of metformin is a good one. Based on retrospective studies it seemed like it might have the benefits you ascribe to it. But so far, in prospective trials it has failed to produce those results. Yet many patients and even doctors don't understand why levels-of-evidence is important and take metformin for prostate cancer, and suffer the side effects for no benefit. You will probably be surprised by this:
"the cause is unknown, so it would be a sensible gamble to pursue the effect... if you were fairly sure that no other major side-effects were likely." That's why I gave you the example of the SELECT prospective randomized trial. Previous retrospective studies had suggested that Vitamin E was beneficial for prostate cancer. It seemed like a "sensible gamble" to take Vitamin E. But SELECT proved that Vitamin E was a cause of prostate cancer in those who took it. At the time we didn't know how it was harmful, but subsequent lab studies showed that the mechanism was its powerful antioxidant effect. Until then, we didn't know how our bodies policed cancer using reactive oxygen species (ROS). I have a degree in biochemistry and I'm sure I don't know all of the science of human cancer. I have learned humility, although it may not seem so to you. Patients, learning a little, often suffer from the Dunning-Kruger Effect:
Ha… I’m definitely not over-estimating my knowledge (I’m at the start of a very steep learning curve… with my life hanging in the balance), neither am I underestimating yours… I’m just asking questions.
I want to live a long and healthy life, as much as is possible… there are obviously things ‘we’ don’t yet know, and I want to explore all the options beyond those which have been given. As those given don’t necessarily lead to a long life. I’m 51… I don’t mind getting a few things wrong and learning as I go (as long as I don’t get major things wrong). I’m absolutely not rejecting treatment, or science, I’m asking questions about it and seeing if there are other possibilities that might not be standard of care for various reasons, but might have some small efficacy. Marginal gains. The one thing I know for certain… is that we can’t be certain of anything…. Beyond death and taxes.
Ps… Nov 6th 2023… ‘Now a new study from Columbia researchers suggests that metformin is indeed a promising drug that could prevent the progression of prostate cancer, but only for tumors with low levels of NKX3.1, which are more likely to develop into aggressive cancers.
“Until this study no one understood this essential aspect of metformin and which patients could benefit,” says Columbia oncologist Mark Stein, MD.’
Lab/animal tests like that are the lowest level-of-evidence (Level 5) along with expert opinion. Everything works in mice!
FYI. Here are the Levels of Evidence in order from worst (5) to best (1). It is like a funnel, with most at Level 5 and very few making it down to Level 1:
5. Much of what is posted on any patient health forum every day: anecdotal “evidence” from patients; YouTube videos posted by Snuffy Myers, Mark Scholz, etc.; lab studies (mouse or test-tube);
4. observational/epidemiological studies of patients;
3. retrospective case-controlled studies, and systematic reviews/meta-analyses of them; cohort studies with retrospectively specified variables.
2. cohort studies (people followed from before disease occurrence) with prospectively specified variables; e.g., Mendelian Randomization Study).
All of the above are just hypothesis-generating. Most hypotheses are, and should be, wrong. Science depends on evaluating lots of hypotheses. There is no shame in guessing wrong; the only problems are when guessing stops and when one confuses a guess for a fact.
1. Large, well-done, and confirmed randomized clinical trials are at the bottom of the funnel; they are not just hypothesis-generating, they constitute truth in medical science. These categories were universally agreed upon after looking at which kinds of studies are likely to have conflicting results, and which almost never have conflicting results. All scientists believe in these categories; “pseudoscience” occurs when people claim to be doing science but ignore these categories.
Thank you, Tall Allen, that is very helpful to help me as I sift through the vast amounts of information out there.
A question, and I guess a pretty obvious one, but I don’t know the answer… if a natural unpatentable substance were thought to hold promise… in the way that Sulfurophane could be efficacious… who would fund the vastly expensive level 1 clinical trials? I’m not suggesting there are conspiracies of silence… more that economics and big business would suggest that it isn’t worthwhile to pour money into those trials if you can’t end up with some well protected intellectual property? Therefore, is it possible that there are potentially good possibilities out there, but it doesnt make economic sense to pursue them? What do you think.
The SELECT trial was funded by NCI/NIH - your tax dollars at work.
The multibillion dollar supplement industry certainly has the resources to fund trials, but are loathe to because they don't want to prove their supps do nothing but make expensive pee.
National governments often fund RCTs where pharmaceutical companies can't or won't. The STAMPEDE trial of Metformin in the UK is an example.
I've been where you are right now. Enjoy a pint, eat the fish n chips with a side of mushy peas. Eat the bangers and mash. Everything in moderation. Life is short. It's even shorter with cancer. Exercise Exercise Exercise. That's the key.Good luck.!
Haha, I think you're probably right... but I'm taking a hardline approach with myself for now... and seeing what effects it has. That may change... bangers and mash (buttery with extra cream) are the pinnacle of human endeavour.
Drive yourself nuts.... you'll have plenty of companionship on this forum. Mean while I'll hike and have delicious meals at mountain huts.Life is too damn short to pass on a dish of Lasagna.
Oh man… that really is the pinnacle of civilisation… a hike and Lasagne… I don’t disagree, and I’d be tucking in right beside you.
I see you have just been walking in the French Pyrenees… beautiful! A few years ago I did some of the GR11 high route that takes you along along the Spanish side… spectacular walking and food. Also, the tour de Monte Rosa starting in Zermatt and crossing through Italy by the Monte Rosa massif is about as good as it gets in my book. 7 days hard walking on top of the world… with well-earned lasagne and chateaubriand at the end of one particularly hard day… and a lo of wine.
My hiking buddy and I did 5 days of hiking the 3rd week in September last year in the Dolomites. Crazy beautiful mountains, food to die for and lots of awesome wine.
2019 we hiked up to the Schilthorne and to the base camp of the Matterhorn. That was right after spending 3 days in Munich for Octoberfest. Great hiking in Europe.
I'm working on Pub Crawl up there in Scotland. I watch a lot of British TV. Shetland, Vera etc. looks like a great biking trip.
Nice! We started TdM with chronic hangovers after a big night on the town… zermatt to the refugio that looks over Gornergrat glacier in one direction and over to the Matterhorn in the other. A sensational day. Almost fell in a crevasse the second.
I haveactually inject my self with firmagon for the past 2 years.Yes i hate it! and some side affects the first few days sometines,Remember to swith sides each month ,If you do it yourself inject very slowly and more importantly with draw slowly.I use an antiseptic wipe to clean the area and wear a nitrile glove .
time factor .i am busy with with work as i have a first aid business.i have a nursing paramedic background ,Keep in mind it is not hard to inject all the pieces join together like a meccano set.
Hi, thanks for your answer... very impressive!! I'm hoping to change to Orgovyx and avoid the injection dilemma for good... but if not, I may consider pursuing. Yes... Bravo!!
I don’t understand why anyone still uses injectables if they can get Orgovyx. No injections, no injection site pain. I would have taken it for sure if it had been available when I was on ADT.
The best argument I’ve heard against the oral is forgetting to take doses. I suppose that could be an issue for some, but I would liken it to driving on the ‘other’ side of the road when I’m visiting a country. Knowing what’s at stake pretty much insures that I don’t forget.
Well, that's what I'm wondering as Orgovyx is I think available in the UK now... the only thing against for me is that it hasn't been around so long and so long term effectiveness is more of an unknown quantity. Injection site issue is becoming a right palaver... though cope-able with if I have to. 3 days of knackeredness seems to be how it's effecting me, along with a fair bit of pain. Obvs a price worth paying... but better if Orgovyx can deliver the same benefit without the SEs.
The availability of Orgovyx is obviously very inconsistent depending on where you are, and for some not affordable. But it has been reliably tested or it wouldn’t be widely available at all. Of course the politics of health care in each country are always in play. If it were me I would advocate as aggressively as is practical to get it.
The quick return of testosterone after stopping Orgovyx is the only major difference. This is true for both the injectable agonists and antagonists. Remember that T recovery after the injectables is likely to be anywhere from slow to nonexistent.
Age, duration of the ADT course and baseline T at diagnosis all affect T recovery after ADT. 3-6 months to get it back is almost always the minimum, and again it can be much longer, return only partially or not at all.
At the end of the day, biological age-specifically how strong and fit you are-makes a FAR bigger difference than anything within your control. Antagonists like Firmagon and Orgovyx are touted for being better for heart health, but the evidence for it is weak and inconclusive.
However, the evidence for the protective benefits of vigorous exercise is strong, and not just for CV health. It is for literally everything you are facing. It lessens or eliminates every side effect, and fights the age accelerating aspects of ADT as nothing else can, and it’s not even close.
After 18 months of Lupron, Eligard and abiraterone my T returned to over 700ng/ml from <10 in 4 months and remains there. My body composition and all my numbers are very good at 68. Of course consequences of treatment (I had a lot of it) both early and late continue to dog me but my heath is excellent otherwise. I shudder to think the shape I’d be in had I not exercised hard and faithfully throughout this journey. Great luck to you!
Thank you, I'll be lobbying hard to get on Orgovyx. And I completely agree re exercise... I've completely changed my regime since dx... changed diet to vegan/wholefood/organic (I know not everyone will agree - but I like it and feel good on it... and have lost a decent amount of excess lard in 6 weeks). I'm also exercising a lot more... swimming 4 times a week, cycling, lots of walks trying to keep around 10000 steps a day. Have dumb bells at home... but about to join a gym to really strengthen my muscles.
Great! Let us know how it’s going. Just be sure to use that gym membership. Remember that statistically over 65% of people have gym memberships that go completely unused, and many more don’t go often enough to get anything done. Don’t be that guy!
Don't worry - I'm def not that guy... I'm aiming to beat this thing eventually.... through diet/exercise/medication/some supplements/giving it a damn good talking to every f***ing day/ and rapid medical advances through exponential computer processing power, AI, nano med delivery etc etc... Exercise is very high on my list. They've got to find a cure one day... I'm planning to nudge myself along until I'm around when they do.
Some insurers...ie mine, deny coverage for the 3-5 times as costly Orgovyx, unless Lupron , Eligard, etc has been tried 1st and some problem with one of those then makes coverage with expensive Orgovyx OK. Perhaps also approved if some definite diagnosed prior CV problem. I don't know the cost comparison for Firmagon and Orgovyx....assume Orgovyx is much more costly. I am not opposed to considering cost when approving/denying coverage...resources are not unlimited.
Anecdotally, neither my one month Lupron shots nor my 3 month Eligard shot was a problem at all...nothing like what I read for the problems with firmagon. Of course, I did have a very experienced nurse do all 3 of my injections. Yes, problems with hot flashes, but just annoyance, not life altering. Keep a fan nearby !!
I don't mind the hot flashes... it's the post injection fatigue and the injection site pain which lasts for a few days which I'd prefer to avoid. Orgovyx seems to be available to some on the NHS.
Yep, I'm starting to really see and feel the correlation of exercise and side effects... if i sit around for too long, i feel a hot flash coming on. If I'm in movement they don't happen. I've been doing a lot of swimming and walking since dx and have lost weight. About to join a gym and pump some iron too.
Interesting post. I'm also in the UK and I've been on degarelix for over two years, and I ALWAYS get bad injection site reactions. At the mildest, it's pain and redness at the site for up to five days. At its worst it's the pain and redness, plus feeling quite unwell, and being laid up for a day or two. I have a great relationship with the nurses at my GP practice, and we've carefully observed all the requirements each time. It's made no difference. I asked my consultant if I could change to leuprorelin (Prostap), and if so, could I revert if I chose. Yes to both questions. I had my first Prostap shot two months ago. Absolutely zero pain, redness or discomfort. I guess it's early days, but so far so good. My hot flushes/flashes have always been mild and infrequent. I think I noted an increased frequency with Prostap in the first month, but that now seems to have subsided. My mild restless leg syndrome is as before. I've noted JohnInTheMiddle's concerns, and that's why I didn't make the change earlier. The last time I asked, Orgovyx wasn't available on the NHS.
I'm doing pretty well, I think. Very mild side effects from the treatment regime generally. I'm also on enzalutamide, and I do a lot of exercise - gym (including heavy weights and some HIIT) three times a week, and I cycle and walk a lot.
Hope this is helpful. You're welcome to PM me if you like.
Thanks very much... weirdly my first double shot I didn't get any bad reactions... the following 2 months have been unpleasant. Interesting to hear that you're doing well having moved to Prostate. I'm just a bit worried about the possibility for increased CV stuff. Am willing to tolerate the F for longer if I can before I'm switched. I don't know if the switch is an NHS cost issue, or more to do with patient discomfort. My fingers are really crossed that I can get myself onto Orgovyx.
Yes to exercise... see my comment above. It def helps.
Hi Broccoli24 - I was on Firmagon for 3 years & suffered injection site issues & flu like symptoms for a few days after each injection- my oncologist changed me to Zoladex an old hormone injection- it’s 3 monthly - I have no injection site issues & no post injection SEs - still get the long term SEs. So far (touch wood) it’s delivered same psa & T numbers as Firmagon but my QoL has improved significantly. Good luck my friend
Thank you 680! Good to hear you've found a solution. I definitely want to keep the trajectory I'm on, but with fewer side effects. If Orgovyx can deliver that, I'll take it (if the NHS will give it!). I'll also ask about Zoladex too.
And good luck to you amigo... I read your bio and a few of your posts... looks like you're doing fantastically well!!
I have used all 3, lupron, firmagon, and orgovyx. Lupron caused heart arrhythmia after 17 months, firmagon painful injection site reaction no matter how administeted, Orgovyx no problems. All 3 cause low T side effects.
If your insurance will cover Orgovyx the decision is a no brainer. Lupron has a higher risk of cardiac problems than the other two. The argument about missing a dose of Orgovyx is a lame one and a poor reason to avoid it.
The other positive about Orgovyx is that your T will return much more quickly for those that may stop it at some point.
Thank you, that's excellent to hear, very helpful, thank you! I'm in the UK and the NHS has recently approved Orgovyx... I'm hoping that I'll fall into the category that it's approved for. The quick return of T... if I ever have a holiday, will be appreciated too. There's a big part of me hanging out for a complete cure for what we have (so fast returning T would be good)...a lot of progress has happened in the last 5, let's see what the next 5 brings.
I was on Firmagon for three months. Stopped ADT for a period and then went on Orgovyx.
I prefer taking a pill (Orgovyx) each day which has dropped my testosterone to less than 5.
Missing a dose, I don't think is going cause my T to rise enough to cause a problem. Plus if the side effects become more than what I want to put up with I can stop taking the pill.
I've never had Firmagan. I've had Lupron for almost 6 years with very few hot flashes. But I change my lifestyle early, dropped 50 lbs., and exercise daily for a nice workout.
Good to hear, thank you! Yes, I changed my lifestyle from day 1... vegan, whole food, organic... lot's of exercise... I feel a lot better for it. If I have a more sedentary few hours, I notice hot flashes come on more intensely. If I'm moving around they don't, and I feel more positive. I'm sure getting the blood flowing is key.
I appreciate your comments regarding the first few days after the firmagon injection. It regularly knocks me on my butt for 2-3 days. I’ve found taking ibuprofen, icing the injection site, and staying as active as possible have reduced the time until I feel better. I’m Gleason 9, and have now been on firmagon and apilutimide (Erleada) for 5 months. PSA down to .152. I’ve had very few side effects, mostly minor hot flashes and annoying brain fog.
Thanks Luka, that all looks like good advice... I took ibuprofen and CBD immediately before and after, and felt fine. SEs kicked in the day after. Will try ice too. Yep, Frain bog here too.
I've been on Prostap 3 monthly Leuprolide injections plus daily Enzalutamide (Xtandi) for over 4 years. I started on a 4 week course of Casodex a Bicalutamide and my first Prostap injection was for 4 weeks. So far I have had a brilliant response, from a PSA high of 1311. I'm in the UK as well. Side effects are some fatigue in the morning and putting on weight around the middle and breast area. This is partly due to me not exercising enough. The nurse does the injection at my local GP surgery.
That's interesting... I'm pretty alert in the mornings and then get really tired around 3pm... a couple of hours after lunch. I'm also getting the injection at my local GP office... different nurses. One was great, the other had worked out her own unique approach, to mash down the 'lump' after it had been injected... I had no idea why and wasn't experienced enough to ask her to stop. If I get her again, I'll def ask her not to do that again.
Glad to hear of your great response. Mine was good too. from 530 to 0.88 in 6 weeks on Firmagon alone. So, I'm wary of swapping over.... unless it's to something that should provide similar results.
Great response as well. Long may it continue. I've fortunately never really noticed a lump after Prostap. I have the Prostap in the belly but for the first year or so it was in the ass. No idea why they changed.
im on lupron @a year now and the injections are largely painless(a little sting as the medicine goes in)…..no after injection negative effects. Realize that it could be different for others but important to know it’s not everybody……I get my shots Q3 mos.
Lupron knocks you out for a day? FALSE. Everybody's reaction is different. For me there is no downtime after an injection or soreness at the injection site. Don't believe the fear. Do whatever gives you the best chance for a long life with good quality of life.
Thanks… I am getting quite a bit of interference post Firmagin injection.., it’s not at all unbearable, but if pills avoid that and have the Same effect.., I’ll take em.
You’d think by now most people would have stopped speaking excathedra and added the proviso “ MY experience has been”. Clearly there are countless different responses to these medicines……glad you addressed it.
On Lupron/Erleada now for 4.5 years, RP with distant Mets in belly, no changes in numbers or mets and so far the usual side effects, but able to work and enjoy life
A couple of thoughts Broccoli: Right now the FDA approval for Darolutamide in mHSPC requires concomitant chemo with Docetaxel. However a recent RCT should effectiveness without it. FDA will probably review in 2025 and likely to approve use without Docetaxel. And yes it is significantly better than Enzalutamide for a number of rreasons. Worth pursuing. Perhaps an "exceptions letter" from your MO could get it for you now. Possible seizure or falling risk could be a justification.
Also, Firmagon may persist and keep you castrate resistant for significantly longer allowing injections every two or three months, instead of monthly. The only way to know would be to track testosterone levels after the one month has expired. Perhaps every 2 weeks to determine your personal longer response. I know it works for over two months in me. Though Orgovyx is an excellent alternative that I now use.
Thanks MateoB, interesting. I’ll ask re Daro… and hope that Orgovyx is an option that’s as effective as Firmagon… and they’ll let me switch if it is. Saludos!
Hey I'm reading about your change in meds here and also looking at your bio. I thought the UK NHS would have performed a radical prostatectomy and then followed up with ADT. I'm just asking because I'm wondering about what the standard of care is in your particular case.
In the next couple of months I may be facing similar choices. My diagnostics are not completed yet.
I’m metastatic, so no point having an RP as far as I know. I was put on immediate adt with Enzalutamide… and will have a little light radiation to the prostate in a few months.
Gleason 7 is just a sample and doesn't really matter in terms of therapy. There is no data that triplet doesn't work for low volume. Darolutamide or abiraterone has to be started at the same time as docetaxel for triplet to be beneficial.
While survival data is not yet mature (half the men have to die for maturity) for the low volume subgroup, they do have long enough progression follow-up to draw conclusions. They reported:
• The percent of patients with undetectable (<0.2) PSA at any time was higher with triplet - 67% vs 29%
•••62% vs 26% in the high-volume subgroup
•••84% vs 38% in the low-volume subgroup
•Time to PSA progression was 74% shorter without the triplet
I think this data shows absolutely that triplet works… but it’s comparing darolutamide + docetaxol & adt against simply docetaxol & adt. So those figures are not pertinent to my treatment (adt + Enza), or my case.
At any rate, I’m going to trust that my oncologist knows what he’s doing with the specifics of my case.
You are right that triplet has only been tested with darolutamide or abiraterone + docetaxel. I can't be certain the same would hold for enzalutamide, although I would suspect so. The learning, and this is relatively new, is that there is a synergy that occurs when docetaxel and an ARSi (abi, darolutamide, etc.) are given at the same time.
" I’m going to trust that my oncologist knows what he’s doing with the specifics of my case." I've found that oncologists are very busy doctors with a full patient load, and sometimes haven't kept up with the most recent developments for every type of cancer. This is probably the case in the UK where it is, I think, rare that one's oncologist is a specialist in genitourinary cancers (please, correct me if that is wrong). What I do is email articles in peer-reviewed publications like the one above, with a note that I would like to discuss this at the next visit. Every oncologist I have visited, and I have visited many (I often accompany patients) is thrilled to engage on such peer-reviewed publications.
Thanks TA for the info… I missed the boat on that one… but some other rear h suggested for what I very specifically have, that doublet with radiation to prostate might be the best… leaving docetaxel in the tank for further down the road. At any rate, too late now for triplet. My psa is now 0.03 after 3 months doublet.
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Change of Plan?
Time to ADT Failure
Lupron shot into bladder?
Frustrated with Lupron weight gain and not being able to drop #'s
