1. < Prostate Cancer

Orgovyx and Zytiga combined

Posted by tjmayo @tjmayo, May 13, 2023

I’m preparing for proton radiation therapy at UFHPTI (Jax). Was all nice and tidy with containment to the prostate only. Did a final PET scan to be sure no metastasis and found 7 lymph nodes on both sides of my pelvis and lower abdomen. So now my tidy has changed to an un tidy aggressive cancer w metastasis. Changed my proton therapy from 6 weeks followed by ADT (orgovyx) for 6 months - to: 6 weeks of Orgovyx plus Zytiga , followed by 8 weeks of proton radiation , and staying on both drugs for 2 years. YUK.
Can any of you guys tell me if you have had these two drugs together and how you tolerated it ? Trying to understand what to expect for these two years. I’m 71
Thanks, Tom

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

zenmasterchip | @zenmasterchip | Dec 14, 2023
In reply to @tjmayo "Great report. Glad for the psa of 0 ! I’ve been on orgovyx 8 weeks and..." + (show)
@tjmayo

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.

Jump to this post

I hear you on the libido... however, my wife says I'm more pleasant to live with w/o the testosterone! 🙂 I've been lucky to have such a great woman! Our relationship has gotten stronger since I was diagnosed. She never complains about my libido, but she does occasionally wax poetic about the old days! 😉 I just can't let her drink most of a bottle of wine! 8-o

REPLY
tjmayo | @tjmayo | Dec 14, 2023
In reply to @zenmasterchip "I'm 69. After a year of Firmagon injections, I was switched to Zytiga, and I have..." + (show)
@zenmasterchip

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

Jump to this post

This is terrific news. Congrats. I’m told that the orgovyx is to stop ( via testosterone reduction ) the PC in the Prostate itself, and that the Zytiga is for metastasized cancer. So it seems to me if your PSA is good and your scans reveal nothing worrisome, then stop the Zytiga.

I have had leg cramps and thought it was dehydration. So I’ll Get some magnesium. Thank you for that !

I am still tolerating both meds real well. I have another year to go.

REPLY
zenmasterchip | @zenmasterchip | Dec 14, 2023

That's even more curious to me then... I had my prostate removed. So, no need to worry about PC in the prostate. And yes, I agree, Zytiga for metastasized cancer, which the doctor is saying I can quit taking if I want. So, I guess... ah.. perhaps taking Orgovyx just to keep my testosterone low, which would inhibit nonresistant prostate cancer growth in any cells left behind and still in me. Then, stop the Zytiga because PSA could only come from a resistant strain of cells, and we would know immediately that's what must be increasing my PSA. I hope that I'm understanding that right. lol

Oh, yes, the Magnesium. I used to get cramps all the time, as I recall years ago, and the medical community, or at least my family doctor, had no idea what to do about them. Then, one day during a visit, he suddenly piped up and said, OH, cramping; Magnesium will take care of those. The best news I'd heard, I'd get them regularly. Now, no more. As soon as I feel one coming on, I grab a Magnesium. Wife and family, too. I'm so glad you could use that info! It made my day!

REPLY
billfarm | @billfarm | Dec 14, 2023

Yes I can. Had prostrate removed 12/15/22. Psa 1.8 then 2.3 by march23. Dr put me on zytiga 1000mg and orgovyx 120 mg with10mg prednisone. By April psa was undetectable and remains so thru dec4. Drugs dropped testosterone from450 or so to20something. Goal was less than 50. I chose oral vs shot so I could bail out if side effects were intolerable. My side effects fatigue initially, maybe a bit of joint pain more than normal. Liver enzymes and heart rythum damage most worrysome. Got ekg and echocardiogram for baseline and check every 3 months. No damage to either so far. Not many concurrent users of this combination. Keep posting
this is a rare combo among guys posting here

REPLY
2 replies
shelby29 | @shelby29 | Dec 15, 2023

Hubby was on Eligard shot and Zytiga pills for 11 months. Did well....now doctors took him off zytiga because he had a heart attack. He will continue with Eligard only for 2 more years. He's Gleason 8, stage T3B. Received 26 radiation treatments early 2023.

REPLY
michaelcharles | @michaelcharles | Dec 16, 2023
In reply to @billfarm "Yes I can. Had prostrate removed 12/15/22. Psa 1.8 then 2.3 by march23. Dr put me..." + (show)
@billfarm

Yes I can. Had prostrate removed 12/15/22. Psa 1.8 then 2.3 by march23. Dr put me on zytiga 1000mg and orgovyx 120 mg with10mg prednisone. By April psa was undetectable and remains so thru dec4. Drugs dropped testosterone from450 or so to20something. Goal was less than 50. I chose oral vs shot so I could bail out if side effects were intolerable. My side effects fatigue initially, maybe a bit of joint pain more than normal. Liver enzymes and heart rythum damage most worrysome. Got ekg and echocardiogram for baseline and check every 3 months. No damage to either so far. Not many concurrent users of this combination. Keep posting
this is a rare combo among guys posting here

Jump to this post

billfarm:
My first PSA after RP was .19 (retested 30 days .18) and I was directed to radiation oncologist who recommended salvage radiation to whole prostate bed and pelvic lymph nodes and 4 mos ADT.
See SPPORT trial.
Just sharing experience.
Best wishes for successful treatment.

REPLY
robertmizek | @robertmizek | Apr 9 11:39am
In reply to @billfarm "Yes I can. Had prostrate removed 12/15/22. Psa 1.8 then 2.3 by march23. Dr put me..." + (show)
@billfarm

Yes I can. Had prostrate removed 12/15/22. Psa 1.8 then 2.3 by march23. Dr put me on zytiga 1000mg and orgovyx 120 mg with10mg prednisone. By April psa was undetectable and remains so thru dec4. Drugs dropped testosterone from450 or so to20something. Goal was less than 50. I chose oral vs shot so I could bail out if side effects were intolerable. My side effects fatigue initially, maybe a bit of joint pain more than normal. Liver enzymes and heart rythum damage most worrysome. Got ekg and echocardiogram for baseline and check every 3 months. No damage to either so far. Not many concurrent users of this combination. Keep posting
this is a rare combo among guys posting here

Jump to this post

I’m checking in to see how you’re doing. How is your PSA?

My doctor wants to put me on Lupron and Zytiga. I’m asking him if we can substitute Orogovyx for Lipton for better testosterone recovery after 2ys and treatment ends. He is being cautious as they are no big studies on the efficacy of the combo.

REPLY
3 replies
tjmayo | @tjmayo | Apr 9 3:39pm
In reply to @robertmizek "I’m checking in to see how you’re doing. How is your PSA? My doctor wants to..." + (show)
@robertmizek

I’m checking in to see how you’re doing. How is your PSA?

My doctor wants to put me on Lupron and Zytiga. I’m asking him if we can substitute Orogovyx for Lipton for better testosterone recovery after 2ys and treatment ends. He is being cautious as they are no big studies on the efficacy of the combo.

Jump to this post

Not sure if you’re asking me, but my docs have had me on both Ziga and Orgovyx since I had my proton therapy radiation last August. I am supposed to stay on both meds for two years. The orgovyx has been easy for me to tolerate, and I have had no side effects, except for the usual hot flashes. from my friends experiences with Lupron, I believe the Orgovyx is a more tolerable treatment. And, as you say, I believe that it’s a faster recuperation when we stop the Orgovyx.
I do have a noticeable drop in energy levels, and a little frustrated that I have to stay on these meds for two years. Since my proton therapy I’ve had two PSA tests both are less than 0.01.

REPLY
1 reply
tjmayo | @tjmayo | Apr 9 3:40pm
In reply to @tjmayo "Not sure if you’re asking me, but my docs have had me on both Ziga and..." + (show)
@tjmayo

Not sure if you’re asking me, but my docs have had me on both Ziga and Orgovyx since I had my proton therapy radiation last August. I am supposed to stay on both meds for two years. The orgovyx has been easy for me to tolerate, and I have had no side effects, except for the usual hot flashes. from my friends experiences with Lupron, I believe the Orgovyx is a more tolerable treatment. And, as you say, I believe that it’s a faster recuperation when we stop the Orgovyx.
I do have a noticeable drop in energy levels, and a little frustrated that I have to stay on these meds for two years. Since my proton therapy I’ve had two PSA tests both are less than 0.01.

Jump to this post

Excuse the typo, I meant Zytiga, not Zyga.
And his Zytiga I am taking is actually abiraterone, which is generic for Zytiga

REPLY
1 reply
robertmizek | @robertmizek | Apr 9 3:48pm
In reply to @tjmayo "Excuse the typo, I meant Zytiga, not Zyga. And his Zytiga I am taking is actually..." + (show)
@tjmayo

Excuse the typo, I meant Zytiga, not Zyga.
And his Zytiga I am taking is actually abiraterone, which is generic for Zytiga

Jump to this post

Thank you for the reply. My oncologist wants to start me on Lupron and abiratetone for two years. I’m asking him to consider Orgovyx instead of Lupron. He’s concerned because there haven’t been any long term studies on the combination and Orgovyx was just approved in the US in 2021.

Thanks again and good luck in your cancer journey.

REPLY
View MoreView Less
Please sign in or register to post a reply.