Orgovyx and Zytiga combined

Sorry to hear that Tom. So was this a first PSMA PET Scan you are referring to or a second one? If there was a previous one in the not to distant past, that would certainly indicate a pretty aggressive cancer. If instead you maybe had a less accurate MRI or Bone Scan, the metastases may have already been there but was simply missed, which is why the PSMA PET Scan is used. I say that only to keep you from going down the path that you're dealing with an extremely aggressive cancer. I haven't heard of anyone on the specific Orgovyx plus Zytiga combo, some of the newest line of approved medications. However, AR antagonists are commonly used with GnRH agonists to alleviate the effects of the testosterone surge that occurs with a GnRH agonist. And, I've read that extended AR antagonists may be used with GnRH agonists or antagonists to achieve combined androgen blockade (CAB). I expect they are looking for some of that synergy. I'm familiar with UFHPTI (Jax) so I know you're in good hands. I'm nearly the same age and am being treated at Mayo Jax myself. Best wishes!

Thanks very much for the reply! This was the first PSMA PET scan - I did have previous MRI Pelvis, CT Bone scans, which showed all clear. This latest PSMA PET scan was a shock. I'm sure the cancer was already there last summer when the standard Biopsi came back "all clear". When my PSA kept rising, they did a fusion biopsi which showed 3 Gleason 8 spots and 1 Gleason 7. My urologist didn't even mention Proton Therapy, only traditional Photon therapy together with HDR Brachy. He told a friend of mine some time ago that Proton therapy was hocus pocus. Lucky for me a friend told me about Proton - I contacted UFHPTI, read the books, and visited for a consult - and signed up. Thanks for your comments about the Antagonists and agonists. Makes sense. Good luck on your treatments at Mayo. Thanks, Tom

Stage 4 to my L2 where they radiated 1 inc outin 2020 and put me back on Zolodex after 4 years off Jan its in L1 so they added Xtandi and Xgeva PSA down from 9.8 to 1.7 in 2 months No affects except tired sometimes Have to avoid Pomegranate and grapefruit juice and those small oranges? as they offset Xtandi
Get on these I'm 78 now Radiation on prostate was Dec 2017 so lasting 6 years and now they say 5+ if it continues to work

Nice. Thank you !

Taking Orgovyx together with salvage radiation post RP. so not exactly answering your question.
however, my experience with 3 months of Orgovyx:
Side effects reasonably mild. Beware of falling; there is a feeling of wooziness or dizziness.
Some fatigue.
I try to walk 50 minutes or so every day or cut the lawn and sometimes I have to push through the desire to stop. also lift light weights (only 4 upper body lifts) 2 to 3 times a week.
both to try to maintain energy/stamina and muscle strength.
Hope this is helpful and best of luck to you.

Also I am 73 and the ADT seems to exacerbate all of my previously existing age related cognitive annoyances.

VERY helpful. Thank you. You know how it is - I read the published side effects and figure I’m gonna be totally whacked. Your reply is encouraging.

I will be on Orgovyx 1 year the end of this August. I also had 45 radiation treatments. The side effects have been minimal, some hot flashes, and some hand pain. I am very active, 80 years old, and did join a gym to do specific exercises for joints (specifically knees.) I was gleason 10, so have been told 2 years of Orgovyx. At the end of the radiation, my psa was zero.

Great report. Glad for the psa of 0 !
I’ve been on orgovyx 8 weeks and start my 40 treatments on Monday. My side effects have also been mild thankfully. Very mild hot flashes.
I have noticed the wrist of my left hand being sore when I flex it.
I had Gleason 8 so I’ll be on orgovyx 2 years as well.
Glad the side effects are less than I feared.
Ps libido is zero. Nothing hapnin down there. Dissappointing but expected and at 71 that ship was already on its way out of port.

I'm 69. After a year of Firmagon injections, I was switched to Zytiga, and I have now been using Zytiga (Abiraterone) and Orgovyx for two years. Other than the occasional fatigue and the difficulty in telling what is what, since this has been the new normal for two years, I feel great. After the occasional hot flashes when I started, I now only get them rarely. When I do, it appears to be related to mistiming and missing my scheduled dose, taking it late (once by 8 hours and yes, I got a hot flash after the next dose 16 hours later). I take Zytiga at 3 pm and Orgovyx at 10 pm. After getting muscle cramps from taking Zytiga, I added Magnesium to my daily regime, and those have all but completely disappeared. (If I remember correctly, there's a warning in the literature about Magnesium depletion.) When I do feel a cramp start to come on (about every two weeks or more), I take an extra dose of Magnesium, and the symptoms disappear before I cramp up.

After three years of undetectable PSA, my doctor wants me to stop taking Abiraterone (Zytiga). Since I seem to tolerate them both very well, I'm pretty nervous about stopping. She tells me it will be healthier for me to quit, especially since I had a minor heart attack (no damage) about three years ago, around the time I was diagnosed with resistant prostate cancer. Stress? 😉 Plus, I'm also diabetic, and the prednisone has caused my skin to become more fragile. I would love to know more about the "maintenance" dosing she's suggesting, where I quit taking the Zytiga. It seems to me that Zytiga is the most beneficial drug against castration resistance. OTOH, I'm posting here today because I was searching for information.

I know Orgovyx has only been out since 01/2021. And I don't know how well or precisely what it does for me. I think taking it alone might expose me to an opportunity to a resistant strain. OTOH, she says it will allow me to normalize and that I will still have to have my PSA checked every three months, and as long as there's no change, there's no worries. If that happens, I also think there will always be the option to return to using Zytiga. But is that riskier than taking them both? I think the reason information about taking Zytiga and Orgovyx together is problematic *is because* Orgovyx hasn't been out that long yet. So, like you, I'm looking for information too.

Again, regarding how well it can be tolerated, I understand from the doctor that I am handling it well, and for the most part, and most days, I do great! (According to the doctor, the abnormalities in my blood work are "normal" for my treatment.) I have other issues that cause me more significant problems, but nothing that will kill me! lol. Ironically, pain doesn't usually kill, and it's unrelated to Prostate Cancer, but that's another story for another time or place! lol