In praise of Orgovyx

My oncologist and my urologist are both watching my slow PSA rise. I am currently not on any treatment. I had a Prostatectomy in 2006 and then 39 radiation treatments in 2013 for my first recurrence.

That's a good reminder that there are urology oncologists as well as generalised urologists. My primary oncologist is a radiation oncologist, but I've also consulted with a medical oncologist and a urology oncologist through my Cancer Centre at various stages in my treatment (as well as a cardiologist, a hematologist, a neurologist, an orthopedic surgeon, and other specialties — easy access to specialists is one of the biggest advantages of getting cancer treatment at a multidisciplinary research centre).

You are at the point where you should have a PSMA PET test immediately to see if you have any metastasis. Your PSA is high enough that you should start getting treatment. At this point, your cancer is growing without any control and that shouldn’t be happening. You need to ask your doctor why you aren’t on something like Lupron yet. You need to be proactive when you have cancer, medical oncologist do not treat people correctly all the time.

After a PSMA PET test you should know if you got metastasis in different places and you can plan for zapping them with SBRT if possible. Once the PET test is done your oncologist should be putting you on the first level ADT. That will bring your PSA down to undetectable almost right away and stop your cancer from growing.

Don’t just wait for them to do something, tell them what you want, it should be no problem with your insurance paying for the pet test

I did have a PSMA PET scan and the scan was clear .

I was on Orgovyx for 6 months. My testosterone went down to 16 and my PSA became undetectable. The side effects--occasional hot flashes, feeling tired--were very manageable and well worth it. My liver enzymes also increased: both ALT and AST to >100. My Urologist called part way through and suggested coming off Orgovyx because of this. BUT I consulted a liver specialist who assured me it was not a concern to have these increases temporarily. I continued Orgovyx. Now that it's done, my liver functions are back to normal. My treatment is at UCSF and I think the doctors are excellent. Bottom line is that you should consider seeing a liver specialist for advice about liver enzymes.

So other people with liver issues know an alternative

There is a hormone solution that you could try. They just finished a study that found that this hormone was as effective as ADT. Estradiol is the hormone. Well actually, that is the name of one patch. The hormone is estrogen. You wear a patch with the hormone in it. Your doctor could look up that study and find that it is just as effective as ADT. they had Richard Wassersug PHD do a one hour seminar on this. He has been using the patches for two years. He wrote the book “androgen deprivation therapy an essential guide for prostate cancer patients and their loved ones.” so this guy knows all about ADT.

If you have BRCA1 or BRCA2 you should not use this option.

Here is the webinar Wassersug gave at Ancan about estrogen/estradiol use instead of standard ADT

Thanks so much! My GI doc - whom I love - is a liver specialist. Will definitely consult with him.
Phil

That's interesting. Do you mean the PATCH trial?
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00100-8/abstract
I'm not sure it would make a difference for most of us (either way, participants still got gynomastia, hot flushes, etc and an elevated risk of heart disease), but as you mention, if taking estrogen instead of suppressing testosterone reduces the risk of liver damage, it could be useful for people showing concerning liver-related values in their bloodwork. Something else that it's worth keeping an eye on as this trial continues.

Key quote:

"Long-term data comparing tE2 patches with LHRHa show no evidence of a difference between treatments in cardiovascular mortality or morbidity. Oestrogens administered transdermally should be reconsidered for androgen suppression in the management of prostate cancer."

Thanks for bringing me the name of the trial, probably could’ve looked it up but this saves time. I remember so many of the tests and trial results, but it’s hard to remember the name of the exact trial when you’ve been on ADT for so long.

One more thing to add about elevated liver enzymes while on Orgovyx. My liver specialist ordered a Fibroscan. It's an enhanced ultrasound that measures the stiffness of the liver and helps determine any scarring. It's non-invasive and not hugely expensive. His advice to continue on Orgovyx despite elevated liver enzymes was supported by my Fibroscan results which were good.