Which ADT medication is best?

I think the point is only that we shouldn't confuse new forum members by calling a medically-unqualified person an "expert," no matter how much life experience they have.

That said, I agree with you and your MO that those of us living with prostate cancer have a different PoV and know things most experts don't (for example, what it's actually like living day-to-day on ADT year after year).

It's also true that we can act as information conduits. Not every expert learns new information at the exactly same time (in any field), so we can hear about an innovative threatment from someone here who received it at a major cancer research centre, and then ask our local treatment team (perhaps at a small city hospital) if they're familiar with it.

Well, that depends...

First there is the issue of financial toxicity associated with one's insurance. I have TRICARE for Life so that's not an issue.

2nd is drug interactions. Your medical team should know and advise you.

Orgovyx does have advantages over say Lupron.

Lower CV side effect profile
No flare
Faster to castration
Higher sustained castration rate while on it
Faster recovery when stopping.
No need to go in every month, three or six months to get a shot.

Disadvantage - requires discipline on your part to take it every day at roughly the same time. I set a daily reminder on my Apple Watch...and if you travel, you're screwed if you do a poor job of packing since it involves specialty pharmacies.

As to this statement by your medical team "The medical oncologist said no additional meds would be necessary if I took Orgovyx..."

Throw the BS penalty flag on him. The side effects are still there, fatigue, muscle and joint stiffness, genitalia shrinkage, loss of libido, depression...will you get all those, not necessarily. I didn't have the last two. Is the severity the same as say Lupron, the data says possibly not. I did 12 months of Orgovyx and 18 months of Lupron, experienced the same side effects with each but from a qualitative aspect, I'd say the "severity" was less on Orgovyx.

There are medications to assist in assist with hot flashes, depression if needed. I did not, generally manageable through diet, exercise and managing stress.

From my foxhole, no T is exactly that .

Yes, a Lupron shot may be a 30, 90 or 180 day shot and we understand it takes some time after that to "clear" the system. So your medical team is not "wrong" but I say that if you are doing ADT for a defined time when you come off, you want that stuff to be gone as soon as possible so your body can recover. The longer you are on Lupron the longer it may take to clear your system is my understanding.

As Colleen says, I am not trained, educated, it's certified or licensed, just sharing my experience

Kevin

5 weeks in on 3 month Lupron shot and changing to Orgovyx for the last 3 months of treatment. Figuring I haven't been on it long enough for hot flashes. I get afternoon fatigue and mild headaches. I've heard staying physically active helps so I have been doing spinning classes, weightlifting and running.

I would avoid Lupron if you can, I was on Lupron for 12 months, and I've had all of the side effects, I've been off Lupron for 13 months and I still have all the side effects, and my depression only seems to get worse. What angers me the most is that once the Dr's. castrate you and have you in remission they really don't seem to care how you deal with all the loss that is going to be with you for the rest of your life. Yes they may have extended your life but with no libido, and I mean none, well it's one heck of a trade off.
From what I've seen Orgovyx would be a better option if you can afford it. I could not.

Very Best Regards,

Have you had your testosterone level checked? Yours may be a case where you want to get treated with testosterone injections so that they can lift all of these side effects. You would want to get your PSA tested more frequently, but it could bring you back to normal again.

Talk to your doctor about this, There are factors that might make it unrealistic.

Hello Jeffmarc,
Yes my testosterone is checked regularly as well as my psa and they are both still at castrate level, and as of yet, my urologist is adamantly against any intervention yet, but he also wanted me on Lupron for three years instead of just one. I try to stay positive but it's not easy. All of us that suffer this cancer know about the struggle.

Very Best Regards,

What is your Gleason. If he wanted you on for three years, you must be a 9 or a 10

You Might consider doing a second opinion. If your PSA has been undetectable for at least six months, other oncologist might have a different opinion

Mark Scholz In Marina del Rey, California Will give you a second opinion, but he doesn’t take insurance and charges about $500. The thing is, he really knows an awful lot. If you search YouTube for PCRI You will find Mark giving many different talks about treating prostate cancer.

My Gleason is 8 4+4 in 4 sectors with 4+3 in 2 sectors all on the right side and the PSMA showed no outside Mets. As far as a second my oncologist said because my decipher score was at 96 I was very high risk that the course of treatment was necessary , another one of my gripes was my psa was only 6.8 , and when I questioned that my psa was relatively low why such aggressive treatment, he said I was lucky it was caught before it got to high.

I am very familiar with PCRI and Mark Scholz and all of his.presentations are very interesting and I have spoken with advisors there as well.

Thank you for your
input , it is appreciated.

If you have even one core with a Gleeson eight you are an eight. The other cores don’t matter. With a decipher score that high and a Gleason 8 I understand why he wanted to keep you on for so long. Your chance of reoccurrence and metastasis is very high. The NCCN recommends that people should be on 18 months of ADT with a Gleason eight.

I had eight years of ADT And it did keep my testosterone quite low along with a second drug. Some of the side effects are quite annoying, But your best chance of being able to beat prostate cancer to the point that It is a chronic problem, not a fatal disease Is by following medical advice. Following advice has gotten me 15 years so far, and I have BRCA2 and had 4 reoccurrence.

Know next to nothing about Lupron. Was on Orgovyx for 4 months. I had many of the Orgovyx side effects. No hot flashes though. Didn't lose my libido completely. With perseverance and concentration, managed a monthly orgasm on Orgovyx. The biggest plus for me for Orgovyx is now that I have been off it for just two weeks, I have less brain fog, better balance, much milder joint/muscle pain, much improved energy, more libido, less constipation. I feel like I am wakening from a bad dream. I did not expect these good developments so soon. As far as cost, I think the full price for four months was around $11,000. Not sure about that. My insurance would pay about 65% and I would pay about 35%. But my urologist's office gave me two months of free samples, I got a "once in a lifetime" free month from the speciality pharmacy, and I was told I got a grant for the fourth month. I do not qualify for anything free on the basis of finances, so it was stunning to me that I never paid anything for my Orgovyx. Just something worth asking about if Orgovyx is unaffordable for you. Best Wishes! Stay strong.