1. < Prostate Cancer

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.

seasuite | @seasuite | Nov 5, 2023
In reply to @tjmayo "I’m on Orgivyx 4 1/2 months. Side effects are almost nil. Seems like better experience than..." + (show)
@tjmayo

I’m on Orgivyx 4 1/2 months. Side effects are almost nil. Seems like better experience than my buddies taking Lupron

Financial - I got accepted by Orgivyx financial support program. Turned me down at first because my tax return 2022 reflected my wife and I before we retired. They just pull the numbers from tax records -
I wrote them back and explained that our current income is only social security - and sent documentation.
They called back and accepted me - they are sending it to me no charge til end of 2023. Then I apply again for 2024.

Hope this helps

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Here's a brief recap of my, all bad, experience trying to get help paying for Orgovyx. I'm wondering if I should start a separate thread as a warning to others:
- After a multitude of calls and appeals, Orgovyx told me that my income of Social Security only, for my wife and I (I retired at 70), exceeded the limit for assistance. That is insane to me!
- After 3 appeals of my denial for a Tier Exception from Cigna, including an independent review, I gave up this effort.
- My provider offered a voucher, free one month supply, but it says only for those who have never tried Orgovyx.

So, the claim on orgovyxpricing.com that 3 of 4 patients with Plan D supplement will have less than $100 co-pays, reminds me of two animals, bulls and horses.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 2023
In reply to @jksenakjr "Glad to. If you go on line to Reel Recovery you can see the upcoming events..." + (show)
@jksenakjr

Glad to. If you go on line to Reel Recovery you can see the upcoming events and how to request participation. Throughout the year, across the country are many events. The cost is free (food, lodging, and fishing) to those that participate (you just have to get back and forth to the event). 3 day event with 12 discussion sessions for the participants and a person leading the discussions. Mine had seven participants, mid thirties to seventies of age. We discussed our lives battling cancer, troubles, worries, happiness, coping, etc. Very informal and very meaningful. We ate together, took breaks together. In between the 1 hour discussions, we learned to fly fish. Equipment was provided. Many volunteers assisted the participants with learning to fly fish. The volunteers themselves were cancer patients or knowledgeable of cancer issues. You come away with "new brothers" and in my case have kept in contact with emails. A couple participants that lived close have met for lunch. Sharing your cancer with the other participants and being out fishing has produced a sense of peace and hope within me. I cannot seem to remove the cancer from me and live with stage 3 each day. I recommend the experience whether you fish or not. Fly fishing was a tremendous experience and release from the battle with cancer. For me, the three month checks, sometimes more, are easier to deal with. I started the battle in Jan. 2014.

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Thank you! It sounds amazing - informal and meaningful.

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jksenakjr | @jksenakjr | Oct 24, 2023
In reply to @colleenyoung "Can you tell me more about the Reel Recovery Program?" + (show)
@colleenyoung

Can you tell me more about the Reel Recovery Program?

Jump to this post

Glad to. If you go on line to Reel Recovery you can see the upcoming events and how to request participation. Throughout the year, across the country are many events. The cost is free (food, lodging, and fishing) to those that participate (you just have to get back and forth to the event). 3 day event with 12 discussion sessions for the participants and a person leading the discussions. Mine had seven participants, mid thirties to seventies of age. We discussed our lives battling cancer, troubles, worries, happiness, coping, etc. Very informal and very meaningful. We ate together, took breaks together. In between the 1 hour discussions, we learned to fly fish. Equipment was provided. Many volunteers assisted the participants with learning to fly fish. The volunteers themselves were cancer patients or knowledgeable of cancer issues. You come away with "new brothers" and in my case have kept in contact with emails. A couple participants that lived close have met for lunch. Sharing your cancer with the other participants and being out fishing has produced a sense of peace and hope within me. I cannot seem to remove the cancer from me and live with stage 3 each day. I recommend the experience whether you fish or not. Fly fishing was a tremendous experience and release from the battle with cancer. For me, the three month checks, sometimes more, are easier to deal with. I started the battle in Jan. 2014.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2023
In reply to @jksenakjr "I have been taking Orgovyx since June 2021. Stage 3, prostate cancer. Tumor is present, cannot..." + (show)
@jksenakjr

I have been taking Orgovyx since June 2021. Stage 3, prostate cancer. Tumor is present, cannot seem to remove the cancer. Taking the Orgovyx has dropped PSA to undetectable. Started with prostate removal, cancer started back within 6 months, drug therapy and 8 weeks of radiation, 5 days a week. PSA started a slow rise, 6 years later started the Orgovyx. No side effects. Went to a Reel Recovery program a couple years ago. Great experience, would go again and recommend the experience, even if you do not fish. I have had heart issues that have been addressed, electrocadioinversion, cryroablation, and stents. Going strong at 73. For now I am undectable on my PSA. Hopefully, my insurance continues to cover the costs.

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Can you tell me more about the Reel Recovery Program?

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1 reply
billfarm | @billfarm | Oct 21, 2023
In reply to @tnola123th "Also... can NOT find how to tell FDA" + (show)
@tnola123th

Also... can NOT find how to tell FDA

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May have posted a reply in wrong area earlier. It said I worked @ fda in a prior life. Back then there were field offices in 14 or more large cities. We routinely investigated adverse drug reactions and other complaints. You would be more likely to speak to a human rather than a menu there.

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billfarm | @billfarm | Oct 21, 2023
In reply to @tnola123th "Also... can NOT find how to tell FDA" + (show)
@tnola123th

Also... can NOT find how to tell FDA

Jump to this post

I worked @ fda in a prior life. If you live in a large metropolitan area there will be a field office . Back then you could file a drug or food complaint and the investigative staff would follow up on it. Likely more able to speak to a human rather than a menu there.

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pbmurf | @pbmurf | Oct 16, 2023
In reply to @melcanada "More stories on its success please Does it replace Xtandi?" + (show)
@melcanada

More stories on its success please

Does it replace Xtandi?

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Found this link
https://www.drugs.com/compare/orgovyx-vs-xtandi
Definitely less expensive

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seasuite | @seasuite | Oct 15, 2023
In reply to @jksenakjr "I have been taking Orgovyx since June 2021. Stage 3, prostate cancer. Tumor is present, cannot..." + (show)
@jksenakjr

I have been taking Orgovyx since June 2021. Stage 3, prostate cancer. Tumor is present, cannot seem to remove the cancer. Taking the Orgovyx has dropped PSA to undetectable. Started with prostate removal, cancer started back within 6 months, drug therapy and 8 weeks of radiation, 5 days a week. PSA started a slow rise, 6 years later started the Orgovyx. No side effects. Went to a Reel Recovery program a couple years ago. Great experience, would go again and recommend the experience, even if you do not fish. I have had heart issues that have been addressed, electrocadioinversion, cryroablation, and stents. Going strong at 73. For now I am undectable on my PSA. Hopefully, my insurance continues to cover the costs.

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Wow, that's an awesome testimonial for Orgovyx...I kinda hope they don't read it and raise prices;-)

Regarding fishing, I'll be brief as it's not a fishing website...I think about fishing nearly every day and go often, mostly ocean. Fly fishing catch and release is nice, but, I usually add another step, catch, fillet and release.

Best wishes to stay 'Going Strong' and undetectable!

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jksenakjr | @jksenakjr | Oct 15, 2023
In reply to @seasuite "Indeed, I started on that webpage and have talked with multiple folks at Orgovyx. It's unclear..." + (show)
@seasuite

Indeed, I started on that webpage and have talked with multiple folks at Orgovyx. It's unclear of the income data that they looked at. However, the appeals person told me that my SS income alone was over the limit. I did not 'retire' until 70, which is the maximum amount of benefit, however, it still seems ridiculous that would be 'too much income'.

Thanks for your concern. Thankfully, at this point, I'm only required to take O four months, although they said initially 4-6 months.

I hope you are doing well with the drug! I've never taken any drugs for a sustained period before and, thank God, the side effects have been mild so far. I'm working out twice as much daily and changed to a healthier diet.

Jump to this post

I have been taking Orgovyx since June 2021. Stage 3, prostate cancer. Tumor is present, cannot seem to remove the cancer. Taking the Orgovyx has dropped PSA to undetectable. Started with prostate removal, cancer started back within 6 months, drug therapy and 8 weeks of radiation, 5 days a week. PSA started a slow rise, 6 years later started the Orgovyx. No side effects. Went to a Reel Recovery program a couple years ago. Great experience, would go again and recommend the experience, even if you do not fish. I have had heart issues that have been addressed, electrocadioinversion, cryroablation, and stents. Going strong at 73. For now I am undectable on my PSA. Hopefully, my insurance continues to cover the costs.

REPLY
2 replies
melcanada | @melcanada | Oct 15, 2023

More stories on its success please

Does it replace Xtandi?

REPLY
1 reply
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