Does anyone take orgovyx and bicalutamide together.
Dad was earlier prescribed lupron so the doc had started him on bicalutamide 100 mg a day.
But then decided to go with orgovyx instead of Lupron.
One MO says to stop the bicalutamide since starting relugolix and the other MO says to continue bicalutamide along with relugolix
Any thoughts
How much was his PSA decline for the time he was on Bicalutamide alone?
Did not check that. Before the bicalutamide was started his psa was 18.
But Yesterday I did a baseline testosterone test for first time and it was 450.
The two readings are not interelated. If he has had a dramatic PSA decline I would stop Bicalutamide now to keep it as a reserve for if/when Orgovyx fails. But, you haven't the data to decide upon. Sorry, can't give you more insight.
Should I do a psa ? But he has already started the orgovyx since 2 days so that may not give a clear picture then of just the decline on bicalutamide ?
Now it is too late. The outcome will be the combination of the two, so unable to tell which one contributed by how much.
Hmm. Wish I had asked this before. 😐
I am sure the bicalutamide helped because before starting he had leg pain and was sometimes taking pain killers and once he was on it he never asked for a painkiller even once.
Bicalutamide is effective against cancer and can reduce the pain a patient has from bone mets. However, Lupron, Relugolix, Abiraterone, Enzalutamide, Apalutamide and Darolutamide are more effective than Bicalutamide. Therefore Bicalutamide combined with relugolix will not work better than relugolix alone. Or much better yet, Relugolix plus Abiraterone, Enzalutamide, Apalutamide or Darolutamide
No doubt about it but, I have some numerical data after which I can objectively assess if he is a weak/typical/or super responder.
Just trying to understand. After 3 weeks of 100 mg a day of bicalutamide, should the testosterone not have been much lower than 450 if he was a strong responder ?
You have got it all wrong from the start and don't seem to be willing to comprehend the two different mechanisms of Orgovyx vs Bicalutamide. You are nailed onto that the only way to treat PCa is by lowering T. This is correct, but it has some small print following, that read: "at the cancerous cell level". The bloodwork that you just did measures T at the blood level. Between the two (blood and cancerous cells) Bicalutamide builds a "concrete wall" to isolate the two. The only, read again, ONLY means by which you can assess Bicalutamide's efficacy is by the PSA rate of decline, T has nothing to do with it, in fact the higher the BLOOD T the thicker the "concrete wall". Sorry for being harsh at you, but it is the 4th or 5th time that you ask the same erroneous question, steming off your misconseption that Bicalutamide works by lowering the BLOOD T. Time to get it right, don't you think?
sorry to be annoying. Just trying to process so much information over the last few days 😊
Ok I kind of get it now. Not fully but kind of.
So , what would you have done if you were in this situation - considering I did not do a psa to know how effective the bicalutamide was and started dad on relugolix only since last two days
Disentangle the two to learn by how much each one affects your dad's PSA. Select one of the two and wait until the other washes out. First option (which I am absolutely certain that you won't do) stop Orgovyx, wait for one week, so that it washes out and measure PSA and T. Second option, (which you will probably do as everybody will advise you to do so) stop Bicalutamide, wait for one and a half month, so that it washes out and measure PSA and T. If either option fails to lower his PSA bellow 0.1, then you will have to try the combo (both of them at the same time) and pray that synergy does a better job.
Thank you. So bicalutamide is similar class of drug like enzautamide right. That is what the MO plan is to start him on in two weeks at 40 mg
Yes, you can use a ballistic missile to kill an annoying sparrow, but there will be collateral casualties as well. Docs are not known for implementing the principle of proportionality. They prefer the "kitchen sink" path.
Hmm. So enzalutamide is the missile with side effects.
So if just add the bicalutamide to the relugolix ( after this 2 day gap ) - apart from not being able to disentangle the effect of each separately , are there any other reasons why that may not be a great idea ? Dad is 83 and I would love to see if just this combo is effective Vs adding something strong like xtandi
Have you heard the proverbial phrase: "First we learn how to walk and then to run"?
How on earth would you know that either of them isn't just enough? Because some silly paper says so? Do you know that in these, so called, studies 95% is the measure of confidence? What happens for those falling on the remaining 5%? Collateral damages? Would you buy a car that would fail to start 18 days/year?
In American cinematography there are scenes of a caricature of a military spouting "nuke them" out (i.e. launch nuclear weapons).
Hmm. So you support the theory of try one at a time and see the results before adding more to the arsenal vs attacking with everything we have got , like the Peace trial suggests ?
Current dosage of half a tablet (25 mg) every 4.67 days keeps my PSA at a ballpark I am comfortable with (0.022).
How did you have the guts to figure this out and go against the tide of what doctors say and the fear 😮!
Where did you see "guts"? As a seasoned electrical engineer I very well know that If we were implementing the silliness of "Maximum Permisible Dosing" to the power grid we would now be communicating via pigeon post. Matching production to demand is the foundamental rule here and mother nature doesn't make any exeptions/favours to silly docs.
I mean that you must have figured out all this on your own right - like you said the doctors would have prescribed the “ missiles” to you too right - needs courage to not take those doses and do this
You are confusing courage with immunity to fearmongering. My life-my decisions. If something doesn't make sense to me ends up into the trash bin.
This works for me In other spheres but where decisions could influence life and death , fear takes over
No need. Relugolix doesn't create a testosterone surge like Lupron does.
Hi Allen. Before starting the relugolix yesterday I did a baseline testosterone test and it was 450 !
Prior to this for 3 weeks he was taking 100 mg bicalutamide as the earlier plan was to start Lupron. Does the testosterone level indicate the bicalutamide was not effective or can’t say that as don’t know the initial level before starting the bicalutamide ?
Bicalutamide raises serum T levels because it blocks all androgen receptors. With nowhere to go, T builds up in the blood.
I Thought they give it before lupron to counter the testosterone surge of agonists ? Confusing if it increases or decreases !
That's what I said.
You said bicalutamide increases T too right ? Then how does it counteract Lupron surge of T ?
No, I wrote:" it blocks all androgen receptors."
And also that it raises T serum levels 😊
Bicalutamide is apparently a first generation AR antagonist ("AR"= "androgen receptor", of which there are huge numbers in the surface of h prostate cancer cell.)
The other "lutamides" are second generation. For example enzalutamide or apalutamide. And some of them are better than others for example in terms of crossing the blood-brain barrier etc.
However I think the key question here is whether you should be doing doublet therapy or not. My understanding is that ADT plus AR antagonist (i.e. doublet therapy)has good clinical studies in support of better results.
Your Relugolix of course is a GnRH antagonist - that's your ADT - and stops androgen production from the pituitary at the top of the testosterone manufacturing and deployment chain.
The AR antagonist on the other hand stops any residual testosterone from engaging with prostate cancer cells on the surface of the cell. That's at the end of the testosterone chain.
To my mind this makes the two therapies complementary. Frist we try to stop making testosterone and then we try to stop using of testosterone.
Whether they should be used for your Dad is another question in terms of tolerability etc. But it doesn't seem to me that just because you have Relugolix that you don't need an AR antagonist. They are complementary not substitutes.
(I can see a confusion on the purpose of bicalutamide between your doctors, possibly - around the use of bicalutamide to prevent the effects of Lupron-driven testosterone flare. That's a separate question from whether or not you should be doing doublet therapy or not. And if so what would be the second med? An ARPI? Or a new generation AR antagonist?)
I could be wrong in my understanding of these two categories of PCa therapy and their relationship.
Thanks John. So if I get it right , bicalutamide is a milder form of the second generation adt like xtandi or zytiga.
The first MO dismisses bicalutamide and says just stop that and wants to start xtandi ( along with the ongoing relugolix ) in a couple of weeks while the other wants to continue the bicalutamide for now and start second generation adt later when relugolix and bicalutamide stop being as effective.
1. DOCTORS ARE CONFUSING - I think you should know what the purpose of the suggestions are from the two doctors.
2. MY MOTIVATION - I'm just trying to figure it out but I'm just an interested lay person.
3. DIFFERENT CATEGORIES OF MEDS - An ARPI like zytiga/Abiraterone is a "androgen receptor pathway inhibitor" and works to stop the synthesis of testosterone everywhere (because ADT only stops the main production of testosterone in the testes) -- the "lutamides" on the other hand work to stop the use of testosterone as an AR antagonist that is to say jamming up the androgen receptors on the surface of the prostate cancer cells. And of course in between is the blood where meds and hormones move around.
This item was corrected
4. NOT GIVEN TOGETHER - So an ARPI and an AR antagonist are two very different prostate cancer therapies. My understanding is that they're never given together.
5. MEDS FOR TWO PHASES - Now you have two phases. Let's explore the two phases. And separate out the drugs used in each phase. The first phase, the start of therapy with just ADT, is that one doctor was worried about the dangerous side effect of a GnRH agonist, Lupron, which causes a testosterone flare, and which was under consideration. And this could be dangerous for your Dad with his metastases. This is the initial phase. My understanding is of course your Dad is not on Lupron anymore, but Relugolix. Relugolix ADT does not cause testosterone flare. In this first scenario of the initial treatment starting ADT, the one doctor wanted to add bicalutamide temporarily to suppress the dangerous testosterone flare associated with Lupron. And as has been pointed out you don't need that anymore because you switched ADT types.
6. PHASE TWO MEDS - Now you have the second phase. This is where you have started ADT with the oral GnRH antagonist Relugolix. And you and your doctors are looking to add an additional therapy to your foundational ADT, which would make it doublet therapy against metastatic prostate cancer. You can add either an ARPI (Zytiga/Abiraterone) or an AR antagonist (the lutamides), but not both.
7. DOUBLET THERAPY - So with the doublet therapy you're stopping the testosterone manufacture at the top (ADT) but in case we miss a little bit you're also stopping the testosterone elsewhere (ARPI) or at the bottom (AR antagonist), take your pick of either additional therapy on top of ADT, but not both.
8. WHY BICALUTAMIDE? - This is where bicalutamide comes back. If your doublet therapy is going to include an AR antagonist, that seems to be the lutamides. And bicalutamide fits the bill. So that might be one of the reasons one of your doctors is talking about that med. Note that in this discussion there are the two phases and the two possible distinct uses of bicalutamide, in phase one and in phase two.
9. BICALUTAMIDE IS OLD -Now concerning the "lutamides", it may be that you don't use bicalutamide at all. For either phase one or phase two. My understanding is that this is an older lutamide. You have learned the names of some of the newer ones. Apparently they have different characteristics in terms of cardiovascular risk and blood brain barrier risk and all kinds of different things. So the selection should be done by someone who is knowledgeable.
10. WHICH LUTAMIDE? - Xtandi of course as you know is enzalutamide. There might be some thinking you want to do between why this particular lutamide or even alternatively why not Abiraterone as ARPI.
11. BEST DOUBLET THERAPY - There is a rhetorical positioning going on here - "we'll start with this 'X' first generation now and then when it stops working we'll use another one later". This is a question for Tall Allen. In terms of how these things work the statistics are that many people enjoy several years or more on their doublet therapy plan. The idea that you're going to change your plan right away or in a short period of time doesn't seem to be the pattern for anything I've read about. And the idea of starting something that's older now and then going to the newer thing later is also something I've never read about. My understanding is you try to go with the best now, according to whatever is appropriate for your Dad.
12. DISCLAIMER - Here's my disclaimer - I offer this as a lay person who is interested in understanding all this. My note here is very long and I lack the time to edit it or make it any shorter. I was motivated because your question seem very important but the clarity of the discussion with the doctors seemed a little bit less than what we might want. Its quite possible some of my notes above are incorrect!
Bravo your dad starting on Relugolix! Maybe it's very simple. He also starts comparatively soon on the right new generation therapy medication to make doublet therapy. And then you're on your way!
And you will watch the markers closely including for liver etc and blood pressure and you will make sure that these meds are tolerated and effective. And as much as possible your Dad will exercise. And do the appropriate supplements such as vitamin D and calcium etc.
P.S. - And I correct in noting your dad has not been subjected to any radiation or surgery? This was my situation so far. I didn't have any radiation or surgery because it was too late. But there's a big upside to that too, I didn't have any surgery or radiation! And so far I've been fortunate to respond well to my drug based therapy.
wow John. Thank you SO much for being so kind and patient in explaining and writing so much. Very grateful and it means a lot to me , as I traverse this new world I find myself thrown into suddenly🙏🏻🙏🏻
You are correct - dad has had no radiation or surgery. No one even bought that up.
This is the history -
Got diagnosed with Pca. PSA 18. PSMA shows spread to bones. Initial consultation was with a urologist who wrote a prescription for bicalutamide to be taken for 10-30 days and said after 10 days he can take the Lupron shot anytime.
I then consulted 2 MO as I felt they would be better at treating this. And I pushed for relugolix , after reading your notes etc about agonists Vs antagonists.
Now one MO (who I most likely would choose finally as he has a higher patient load and seems more experienced) said to take the relugolix and to meet him after two weeks with testosterone and liver and other tests and he will add 40 mg of enzalutamide then. He just dismisses bicalutamide as useless and said to stop it.
The other MO - he said to do the relugolix plus continue bicalutamide and meet him in a month with psa.
So, as of now dad has taken the bicalutamide for 3 weeks ( it did lessen his leg pain a lot ) and then stopped it since two days since he has started the relugolix.
Thanks a lot again. God bless you.
I am a 13 year recurrent PC patient at City of Hope who had minor hot spots in para aortic lymph nodes detected in my last PSMA scan 18 months ago after my PSA had risen to 0.63. I have been on ADT vacation since last September after a prior six month course of Orgovyx alone. My first time on ADT and it worked very well. It brought my PSA to less than .008 within the first 30 days. However, my PSA is now on the rise again albeit slowly. I may very well be a candidate for doublet hormone therapy in the near future.
During my last follow up visit last March my MO, Tanya Dorff, discussed the results of the EMBARK trial and is recommending Orgovyx and Xtandi should I need another round of ADT after my next PSMA scan. I will find out later this week if my PSA has risen to the point where another scan is in order.
I had a tough time with fatigue on the Orgovyx and managed it the best I could with daily exercise. However, I’m very concerned about the increased fatigue that might be caused by the two drug combination. I know Bicalutamide’s side effect profile is minimal. However, since it is such an old drug, I would think Orgovyx combined with Xtandi would have better results.
Any further comments on Orgovyx combined with Xtandi would be greatly appreciated.
I was diagnosed in late 2010. After RP in March of 2011 Gleason 3 +4, stage 3TB N1 M0 with EPE and 1/16 lymph nodes positive. PSA was 12 at the time of RP, undetectable after.
Recurred 4 years later and had whole pelvic radiation with Bicalutamide. Was on watchful waiting and recurred again with 3 minor spots in para aortic lymph nodes detected on PSMA scan. Had a second round of RT. Was on watchful waiting and recurred again with minor hot spots in upper abdominal lymph nodes detected on PSMA scan. Both RO and MO recommended 6 month course of ADT. I chose Orgovyx and started in March, 2023. On ADT vacation since September 2023.
Have been upgraded to stage 4. FWIW, according to my MO and RO not considered metastatic on traditional scans, but no longer considered oligometastatic on PSMA scans. My PSA has never reached more than .63 in the last 13 years, so I believe I have had a pretty good run at City of Hope. My MO and RO are two of the best.
Relugolix/Orgovyx or Enzalutamide/Xtandi? 
Overwhelming hot flashes. Orgovyx/Relugolix
Starting relugolix / Orgovyx 
Switching from Lupron to Ogovyx
