What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...

Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.

PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.

PSMA PET CT showed nothing.

Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.

Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.

I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?

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

@edva1943

I was on active surveillance for three years. When PSA started rising again (6.4) and a third biopsy showed PC becoming more aggressive, doctors recommended treatment: six months of Orgovyx, and Cyberknife. The first few month of hormone treatment weren't bad, but in months 4, 5, and 6 hot flashes became more intense, and muscle weakness much and fatigue more noticeable. Hot flashes and weakness continued for about two months after treatment, with sleep difficulties. At the end of treatment, PSA was 0.03, and T was 3. My labs 10 weeks after treatment showed PSA at 0.13, and T back up to 255 -- close to pre-treatment levels. So everyone is quite happy with the results so far. The doctors said that Orgovy has a faster recovery, which seems true. I'm 79 y.o.

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Orgovyx recovery time?
Reread edva1943 post, and that was helpful.
4 wks post 4 mos orgovyx and still struggling with fatigue and "wooziness ".
Age 73
However I think that I feel a bit better (10%ish).
Anyone with "recovery" from Orgovyx, or other ADT agents have experience to share?

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@ftd3

maverick75, Thank you for your post.
You talking about your journey got my interested to know if which Mayo Clinic you are getting therapy and who if your great sounding RO?? Sounds like you did well when you found him. Take care.

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My RO's name is Albert Attia, Mayo Clinic Jacksonville, FL. As an update, my Decipher score came back .69 which put me in the high-risk category. Doing 6 months of Orgovyx.

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@maverick75

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.

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maverick75, Thank you for your post.
You talking about your journey got my interested to know if which Mayo Clinic you are getting therapy and who if your great sounding RO?? Sounds like you did well when you found him. Take care.

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@natem

May I ask, what form is the Calcium in? I don't mean capsule or pill, but like Magnesium it may be Magnesium Oxide vs Magnesium Malate, Glycinate. Some are easier/harder on digestion, some absorb better and I believe some doesn't accumulate in arteries, etc... thanks much for any insight, etc.

All the best!

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Calcium tabs with D3 from Costco Purple 600 each swallow hole

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@melcanada

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

Jump to this post

May I ask, what form is the Calcium in? I don't mean capsule or pill, but like Magnesium it may be Magnesium Oxide vs Magnesium Malate, Glycinate. Some are easier/harder on digestion, some absorb better and I believe some doesn't accumulate in arteries, etc... thanks much for any insight, etc.

All the best!

REPLY
@melcanada

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

Jump to this post

@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?

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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

REPLY
@kujhawk1978

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

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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.

REPLY
@philnob

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

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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

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@pueblokid1

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

Jump to this post

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

REPLY
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