What's your experience with Orgovyx (relugolix)?

I’ve been on Orgovyx for about 2 months. My PSA has become undetectable . The main side effect I’ve experienced is hot flashes a couple of times/day for a few minutes. To me it’s an annoyance but a small price to pay considering the benefits. I hope guys won’t be scared off by the list of possible side effects which, for legal reasons , must be all inclusive. Most men will not experience many of them. Some might. One advantage of Orgovyx over injected hormones is that you can always stop if you are unlucky enough to have bad side effects.

Hi,
I have had a good run with Relugolix that lasted for 14 months. My PSA was 1200; within several months it was down to .25. Side effects included muscle and joint stiffness, gynecomastia, but no hot flashes.
In the past several months the PSA number has reached 2.5, so I will be having a Pet scan next month to determine what course of action to take next.
Probably a stronger hormone. I hope this can help you. Good luck, and stay positive.
Best regards,
Phil

Thank you for the info on Orgovyx, my psa has started to rise after being cancer free for 8 years. One cancer doctor wants to put me on this drug but the urologist who did the surgery wants me to wait until it shows up on a psma pet scan. The first scan didn't show it had spread anywhere. Not sure what to do or who to believe. Any comments would help

My first scan didn’t locate any new cancer cells, so we moved on to something called a Choline C-11 pet scan.
( I believe it is a more intense imaging process). As a result, cancer cells were found, and I started a regimen of hormone therapy which I am still on today.
I hope this helps, and I wish you all the best.
Phil

I had RRP in 2021 PSA went from 11.6 prior to surgery and dropped to 0.37 post surgery. My PSA continued to climb so 6 months after having my prostate removed (PSA up to 0.69) I had 34 rounds of salvage radiation to the prostate bed. PSA rose during radiation treatments to 1.29. PET/CT scan did not show anything. I switched medical teams and finally got a Urological Oncologist. We decided to wait on any ADT and keep monitoring everything. My 3rd PET/CT scan (PSA up to 6.56) did show a tumor in my chest. My Urological Oncologist hooked me up with an Oncologist that was overseeing a drug trial. The Metacure trial was for guys with Very High Risk Localized and Low Volume Metastatic Prostate Cancer. I was put on Orgovyx along with a second trial drug Erleada. When I started the trial 03/23 my PSA was up to 13.46. One month into the trial PSA dropped to 0.15. I finished 5 rounds of radiation to my chest May 1st.
My PSA has dropped to 0.02 now, PET/CT scan shows no metastasis and other smaller nodules they saw in my lungs (but did not light up on PET/CT) have also reduced in size or are gone. So far the side effects have been manageable. Hot flashes and some fatigue are the side effects most notable. Some minor breast enlargement and mussel loss are going on as well. If I had started ADT before the Metastasis showed up I would not have been eligible to be part of the trial. So for me waiting to start ADT was a good thing. Monday I go in for lab work and to meet with my medical team. Please feel free to contact me if you have any questions. Wishing you all the best,Robert

Your urologist may be right...you don't say what your PSA results are so difficult to provide feedback. The one cancer doctor you describe may be simply following traditional treatment thinking, PSA is now rising after being undetectable, initiate systemic therapy...ADT.

More mainstream clinical practice is to image with newer scans such as Plarify, PSMA -68, Aximun, which are more sensitive than the C11 Choline. These scans can locate the site(s) of recurrence at PS below .5 though .5-1.0 is more of the "sweet spot."

The question you may want to ask yourself, will imaging inform the treatment decision...if yes, then do it.

What newer imaging can do is inform the treatment decision, particularly for radiation. As you can see from my clinical history in the attached chart, we did a Plarify scan when PSA rose to .7. It located the recurrence, a single PLN. We treated that with 5 SBRT and added six months of ADT to clean up the micro-metastatic PCa. Without the imaging, the radiologist has nothing to "shoot" for.

Also, do a literature search for doublet or triplet therapy, in my experience, suggesting mono therapy is not mainstream thinking.

Kevin

Xtandi in Jan PSA down to 1.7 from 9.8 Xgeva added to push calcium into bones L2 radiated 2 years ago Now in L1 and T 10 11 Take 1200 ng calcium daily

78 Radiation 49 x back in 2018 March Zolodex back on in 2020

Xtandi 4 a day $40 each all covered in Canada

At Sandals Royal Bahamian enjoying life rain but who cares

Well said. In my case (intermediate, unfavorable, localized), I talked to experts across the county and decided on treatment at Mayo Clinic because I found an RO who is leaning into the science. I ended up with all of the testing noted followed by SBRT. He's using all previous testing plus my risk profile on the Decipher test to determine if he'll recommend ADT (relugolix in my case), and if so, for how long. Personally, I've never liked the notion of "one size fits all" and "that's the way we've always done it..." I realize that each person's journey is unique, but for me, research to gain understanding and insight and finding a treatment team you are totally comfortable with is key.

On Xtandi and psa back down to 1.0 Xgeva added Take 1200 mg calcium daily
Anyone try Turkey Tail mushrooms google it
And black seed powder
and bitter apricot seeds
Say it clears cancer

@melcanada
When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. As per the disclaimer for Mayo Clinic Connect https://connect.mayoclinic.org/blog/about-connect/tab/disclaimer/
"All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community."

To help with your research, I found this article by a radiation oncologist who practising integrated cancer care in Australia. In particular, I think you may appreciate the studies she cites.
– Supplemental Mushrooms https://www.drcarolhaddad.com/blog/supplemental-mushrooms

One of my favorite websites for finding evidence-based info about herbs and supplements is Memorial Sloan Kettering Cancer Center (MSK) complementary therapies database:
– Search About Herbs (cancer specific) https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs/search

Here's what they have on Chaga Mushroom https://www.mskcc.org/cancer-care/integrative-medicine/herbs/chaga-mushroom

Keep in mind that natural substances can also have toxicities, adverse side effects and treatment interactions.

Luckily, more and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine. I hope your oncologist is someone with whom you can speak openly about your interest and use of integrative and complementary medicine. Does your cancer center have a integrative medicine department?