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

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billfarm | @billfarm | Apr 9 8:16pm
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.

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Same problem they don t trust anything that doesn’t have 5yr or longer studies. Orgovyx was only fda approved Jan 22. Long studies don’t exist yet . I’m on orgovyx/Zytiga only side effects fatigue and sweat a bit more. Orgovyx took my psa to undectable in 3wks still umdectable@months. Cautionary tale xytiga only seems to exist as generic abiriteroneacetate. Use 250x4 vs 50mgx2 huge ripoff in pricing on 500mg

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2 replies
billfarm | @billfarm | Apr 9 8:18pm

Don t have Lupron experience but this forum tells of leg pain and long time recovering testosterone

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robertmizek | @robertmizek | Apr 9 8:54pm
In reply to @billfarm "Same problem they don t trust anything that doesn’t have 5yr or longer studies. Orgovyx was..." + (show)
@billfarm

Same problem they don t trust anything that doesn’t have 5yr or longer studies. Orgovyx was only fda approved Jan 22. Long studies don’t exist yet . I’m on orgovyx/Zytiga only side effects fatigue and sweat a bit more. Orgovyx took my psa to undectable in 3wks still umdectable@months. Cautionary tale xytiga only seems to exist as generic abiriteroneacetate. Use 250x4 vs 50mgx2 huge ripoff in pricing on 500mg

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Thank you for taking the time to write. I sincerely appreciate it. Have you checked out Mark Cuban‘s pharmacy for the pricing? 4×250 mg appears to be about $134 a month.
costplusdrugs dot com

Best wishes for success in your fight!

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1 reply
billfarm | @billfarm | Apr 9 11:41pm
In reply to @robertmizek "Thank you for taking the time to write. I sincerely appreciate it. Have you checked out..." + (show)
@robertmizek

Thank you for taking the time to write. I sincerely appreciate it. Have you checked out Mark Cuban‘s pharmacy for the pricing? 4×250 mg appears to be about $134 a month.
costplusdrugs dot com

Best wishes for success in your fight!

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I heard that Cuban gives drug grants each year up to a certain number. Does he do that through his pharmacy ? Xytiga/arbiter one costs my insurer 14k monthly with a$146 copay. The 500mg has a $1370copay which got my attention.

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1 reply
robertmizek | @robertmizek | Apr 10 9:11am
In reply to @billfarm "I heard that Cuban gives drug grants each year up to a certain number. Does he..." + (show)
@billfarm

I heard that Cuban gives drug grants each year up to a certain number. Does he do that through his pharmacy ? Xytiga/arbiter one costs my insurer 14k monthly with a$146 copay. The 500mg has a $1370copay which got my attention.

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I can’t answer the question regarding grants however I know that the actual price that he charges for generic abiraterone acetate 100 250 mg pills is $134 without insurance.

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billfarm | @billfarm | Apr 10 10:32am

On orgovyx/zitiga 13 months Gleason 9 nodal involvement psa undectable since 3rd wk testosterone less than 10. Sort of out of fresh ideas . Went to consult Dr Kwon he said this about the drug combo “nicely aggressive “. So my oncologist and he concurred on your drug combination .

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billfarm | @billfarm | Apr 10 11:21am
In reply to @maverick75 "Sorry to hear that Tom. So was this a first PSMA PET Scan you are referring..." + (show)
@maverick75

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!

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On orgovyx/xytiga 13months psa undectable after 3wks . Testosterone 10. Went to consult Dr Kwon he commented that the combo was”nicely aggressive “So he and my oncologist concurr on that.

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lag | @lag | Apr 10 4:20pm
In reply to @billfarm "Same problem they don t trust anything that doesn’t have 5yr or longer studies. Orgovyx was..." + (show)
@billfarm

Same problem they don t trust anything that doesn’t have 5yr or longer studies. Orgovyx was only fda approved Jan 22. Long studies don’t exist yet . I’m on orgovyx/Zytiga only side effects fatigue and sweat a bit more. Orgovyx took my psa to undectable in 3wks still umdectable@months. Cautionary tale xytiga only seems to exist as generic abiriteroneacetate. Use 250x4 vs 50mgx2 huge ripoff in pricing on 500mg

Jump to this post

We used Mayo Clinic Specialty Pharmacy for Zytiga and they always dispensed the Zytiga in 250 mg, four tablets to be taken every day with prednisone It should be easy to get generic Zytiga, which is abiraterone, in 250mg, pretty much anywhere as that seems to be SOC.

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larryf954 | @larryf954 | Jul 22 10:31am

I’ve been on Orgovyx and Zytiga; for 5 weeks and started my 40 radiation treatments a week ago. My side effects so far have also been mild thankfully. Very mild hot flashes and arthritic pain in my hips. I had Gleason 9, so I’ll be on ADT for an undetermined time. I fear the side effects will become more pronounced and I want to consider stopping the ADT after 6 months. The doctors are mentally preparing me for a longer period.

Wondering if anyone has a similar disease stage profile who considered or actually stopped the ADT shorter than 18-24 months?

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tjmayo | @tjmayo | Jul 22 12:03pm

Great question. I’m 72 and a similar case.
I had proton therapy for 8 weeks at UFH for Metastatic PC ending in Sept of 2023. I didn’t know it was metastatic until the final whole body scan before my treatments. I was Gleason 8. The docs put me on Orgovyx and Zytiga - they wanted two years on both. . I’ve almost finished one year since my last proton treatment - minimal side effects as you have. My PSA has been undetectable the last 9 months.
But I would like to come off these meds. I had back pain before and it’s worse. I can’t walk or stand for long periods without considerable pain. My hips hurt and my strength is really diminished.
Libido is zero and I don’t even have any hair under my arms or on my chest anymore.
I have an annual meet up with the doc in Sept and I’d really like to come off the drugs and get my testosterone back. But I sure don’t want the cancer to come return.
I wonder if the docs are being too cautious with 2 years of both meds.

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