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What's your experience with Orgovyx (relugolix)?
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?
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HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
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Let us know how it goes ! Fingers crossed
@tjmayo
I ran out of options and just tried emailing:
"Hi Dr. Bourla,
I’m sorry to trouble you, however, I’ve completely run out of options after spending many hours investigating how to reduce my outrageous copay for a drug that is vital for my treatment of prostate cancer.
I will condense all the details into the following key points:
- I chose Orgovyx ADT over injections and noted the case applicable for me:
IF YOU HAVE MEDICARE PART D:
3 out of 4 ORGOVYX patients paid
$100 or less per month on average*
Link provided to orgovyxpricing.co
- On the advice of my care providers’s Orgovyx rep., I filed for the Patient Assistance Program. My application was rejected.
- I filed an appeal sending proof that I retired and am collecting social security.
- Today, Michelle, from your appeals group, advised me that I am again rejected stating the my Social Security income was too high to qualify for PAP.
- Here is the message from Biologics regarding my copay:
Your copay is $1366.22. For payment, we have a card on file to continue with this payment option, text Y. To change your payment option, text N. Msg&DataRatesMayApply, Opt-out:Txt STOP
I think you will agree that the co-pay amount is outrageous for a drug that is medically necessary and there is no generic alternative or other available antagonist. Kindly consider my request for a co-pay that is in line with the website: “ 3 of 4 patients paid $100 or less."
Bummer. It’s a good email. When I appealed the upper income limit was $55,000 for my wife and I combined. Our SS income is under that.
One thing is your second month will probably ratchet down from 1362 to 700 ish. It’s about the donut hole.
Another option is just take the Lipton shots. My buddies in Florida took them and seemed to tolerate OK.
Hang in there.
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1 ReactionI'm not sure if this is the same site you used. https://www.orgovyx.com/support-and-resources/
It provided me with a card to pay only $10.00 per month.
Hope this helps you.
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1 ReactionIndeed, 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.
More stories on its success please
Does it replace Xtandi?
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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1 ReactionWow, 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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1 ReactionFound this link
https://www.drugs.com/compare/orgovyx-vs-xtandi
Definitely less expensive
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.