Starting ADT

@stage4lovolmetpc - Perhaps I left the wrong impression. I'm just looking for a second opinion. The current plan is Eligard w/ Abi and Prednisone. That might be the right track but I'd like to check with a GU oncologist as recommended by several folks. I heard that Orgovyx has fewer side effects but is expensive. I wanted to discuss this choice with the Med Oncologist but the wheels were put in motion before I could have this conversation. So the 2nd opinion is important to me.

@damonk
You absolutely have to be on Biclutamide For two weeks before you start Eligard. If they are not doing that, then I would probably stop going to that doctor because they don’t know what they’re doing. If you do not take Biclutamide For two weeks before you start Eligard You will get a testosterone flash that will raise your PSA.

I had Eligard (which is identical to Lupron) Along with abiraterone. The side effects very considerably between people. You just have to see what it’s like for you. I already told you about my experience with abiraterone.

@damonk Yes that is why I chose Orgovex over Lupron, as it does not cause a tumor flare. And now Jeff says biclutamide has to be taken for two weeks before Eligard, and is identical to Lupron, which Dr said nothing about. I guess you have to advocate for yourself. Next I will be talking to Dr about Nubeqa (spelling?) instead of the abi, which can have some serious side effects...and Im not too happy taking prednisone. Yes Orgovex is expensive but if you are on medicare, you will have a 2100 dollar out of pocket cap, which I satisfied in the first two months of the year....lol. That is a whole new conversation, the price of cancer medication... navigating which Medicare insurance plan to buy took more time than researching pc treatments...I waited a couple months to decide what to do but now that Im on ADT I feel better knowing that I am doing something to slow things down, maybe keep the pc out of my bones....thanks for your response, Ill come back and see how you are doing, it has been a learning process for sure...

Something I’ve come across more frequently lately is the treatment approach that is based on using two drugs (ADT & ARPI) which can usually keep PSA down for a time, combined with regular PSA tests and drug “ holidays”. I think it has come to be known as Intermittent Therapy. Rather than pursuing a cure, which is often impossible with metastasis, the goal is to keep the cancer knocked out while allowing for a better quality of life (off ADT) between drug treatments. The result may not be a true cure but it delays castrate resistance and avoids radiation with its potential side effects. And sometimes there are mets that are impossible to safely radiate. (Chemo is also a possibility in this situation.) I’m not recommending it just bringing it up as a contribution to the discussion. I understand they are currently doing studies on this treatment approach. UCLA did a study showing that the first nine to twelve months are when the drugs are most effective.

@stage4lovolmetpc, I was able to get Orgovyx at zero out-of-pocket cost through The Assistance Fund (TAF): tafcares.org

I was skeptical TAF could help -- mostly I was unsure if I exceeded their income threshold. But I went ahead anyway and submitted my application.

Definitely worth the effort to apply.

Not only did TAF automatically cover my Orgovyx costs after my application was approved -- no additional paperwork -- they also eventually reimbursed me for a month's supply I paid out-of-pocket before I had submitted my application.

@stage4lovolmetpc This is a learning experience for all of us.

Tumor flare doesn’t occur with Orgovyx because testosterone drops so quickly.
> After starting hormone therapy (Lupron/Eligard/etc.), the hypothalamus detects that testosterone (T) levels are slowly dropping, and releases hormones that cause the pituitary gland to release hormones that cause the testes to produce more T to offset the slow drop. This may cause a brief “spike” in T which can result in what is called "tumor flare” or “testosterone flare.” This is not a good thing to happen since prostate cancer feeds on T. (This may also cause a spike in PSA.) However, this spike can be prevented by starting with Bicalutimide (Casodex) a short period of time before starting ADT, which blocks T from attaching to prostate cancer cells, which reduces the risk of tumor (testosterone) flare when hormone therapy is started. Tumor flare does not last long and will go away as the T level continues to drop. Firmagon (degarelix) and Orgovyx (relugolix) work via different mechanisms and don’t result in that T spike.

> There are many ADTs that are “identical” to Lupron (i.e., they all have the same active ingredient Leuprolide Acetate: these ADTs are Lupron, Eligard, Prostap, Camcevi, and Lucrin).

> You have four ARPIs (androgen receptor pathway inhibitors) to choose from: Zytiga (abiraterone), Erleada (apalutimide), Xtandi (enzalutimide), and Nubeqa (darolutamide). They each have their own safety profiles (e.g., “some serious side-effects”). (See attached graphic)

So much new information to learn.

Damon

As always, plenty of great feedback from members of this forum.

You ask - "I'm wondering....if there are any other alternatives."

Yes!

Others have discussed those.

Some additional thoughts.

Generally doublet therapy is the route in cases such as yours. The questions are if that, then which agents Lupron, Orgovyx..how long / 6-36 months, continuous or intermittent...if the latter, what's the criteria for coming off treatment?

Not sure why radiation is not in play given what you describe.

Triplet therapy is an option though generally, the data says chemotherapy is more value added in high versus low volume PCa.

There is also ARI monotherapy, see the EMBARK trial.

Definitely not mainstream in the USA but the PATCH trial and the use of Estrogen is interesting.

There are clinical trials where radio isotopes such as LU 177 are being brought forward in the HSPCa space - https://ascopubs.org/doi/10.1200/JCO.2025.43.16_suppl.5009

Do your homework, have discussions with your medical team, decide in concert with them.

From my foxhole, they don't seem to be taking due diligence in laying out your options.

Kevin

Hey! Welcome to the "club" my husband got diagnosed a year ago when his PSA was almost 300! Then Gleason almost all 8 and 9s and psma scan showed all over his body! Lungs, lymph nodes, bones etc.
They said triple therapy and he refused at first! He'd rather die than be castrated! I cried and was angry that if I got breast cancer or something I'd cut them off or whatever is needed if it meant more years with the family..
He finally relented but refused lupron for different reasons and actually oncologist wanted him to start with firmagon first then lupron but my husband continued firmagon, later zytiga pills and Prednisone (he did some supplements for a while and it wrecked his liver but it got back to normal once he quit those) then over the summer he did chemo docetaxel and did very well with it.
Overall he's doing well, no sex drive but I told him I'd have no sex life either way!
He was tired from chemo but is back to normal somewhat now
His PSA is 0.2 now and another psma pet scan after chemo showed great improvement!!
It's scary though
Last month his PSA was 0.19 last week it was 0.2 so technically it went up 0.01 so we'll see what they say next month.
He exercises daily and eats perfectly and doesn't look like a cancer patient at all, no pain, the urge to pee all the time is gone but he doesn't sleep well because of hot flashes. Gabapentin helped with that and also his mood but now the PSA went up a tiny bit so he stopped that too.
It's all so scary. Hang in there

Thanks for all the great input on options.

I've been trying to learn all this stuff in a short period of time. As I've mentioned before, I have an appointment
at UCSF on the 24th for a 2nd opinion and want to go to it well informed. I hope waiting these extra couple of weeks is not detrimental. But right now, with my current Med Onc, I feel like a customer at a Ford dealer buying a Model T: "You can have any color you like, as long as it's black". For me that color is Eligard w/ Abiraterone + prednisone. I wasn't given any other choice. And he didn't mention the use of biclutamide to tamp down the testosterone surge from the Eligard.

Anyway, I really appreciate the continued comments and testimonies. Onward and upward!

@damonk
Not sure who you are seeing at UCSF but Doctor Peter R. Carroll Is really a great person to see in one of the top urologist at UCSF and other places.

UCSF really does things right for prostate cancer patient. I know a lot of people that go there, I attend the UCSF monthly online advanced prostate cancer meeting, and at least half of the people in the meeting are Being treated at UCSF. They even have a special unit for people that have genetic problems with some great doctors.

My brother was treated at UCSF My doctor Roach, A really great radiation oncologist. If you’re going to talk to somebody about radiation, you should speak to him. I know a lot of people that have been treated by him and are really pleased