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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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@kingnimshi
You definitely have had it worse than a lot of people.
I was on Lupron for 5 years and Orgovyx for almost 3.
For 2 1/2 years on Lupron I was undetectable, Then I became castrate resistant And I had to go on an ARPI.
My A1c has never been a problem. I was 5.5 in the last test I get one every three months. I eat a small piece of cake or cookies every day, and I do watch my carbs.
My red blood cell counts are low as is my hemoglobin but my white blood cell counts are normal.
My liver and kidney numbers have always been real good.
I’ve been on drugs to keep my bone density up for the last seven years. That can be real important to do. Taking calcium twice a day and vitamin D also helps.
Never had pain in breast tissue.
I had really bad hot flashes for a few years, They finally have become mild with Orgovyx.
My PSA has been undetectable for the last 28 months. I was on Zytiga for 2 1/2 years and I was only undetectable one month but I am now on Darolutamide For almost 3 years and that’s kept my PSA undetectable.
I’ve never had any fatigue from these drugs, Definitely No libido however.
The brain fog is a common problem, but I am 78 now and that seems to be a little bit normal at this age.
There’s a wide variety of side effects people have from these drugs. Not everyone has all the side effects.
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1 ReactionI noticed most input is for people fairly new to orgovyx.
I have completed 18 months of a 24 month course.
Immediately, no energy, no libido.
Within two weeks, intense hot flashes.
Within a month brain fog and memory lapses.
Hot flashes stopped after about nine months. Learned to cope with minimal energy. No libido.
Brain fog cleared over time. Memory lapses increasing.
Long term issues:
serious loss of bone density
very low white and red cell counts
liver numbers on blood test very bad
greatly increased A1C numbers despite very low carb almost no sugar diet.
Development of painful breast tissue.
Beats bone cancer I suppose but the side effects are rather damaging.
PSA down from 21.5 to 0.3
@edo
Thank you much for the input. Much appreciated.
@georgemc I hope you're having good luck with the appeals process. I have to be careful giving advice, but us veterans need to stick together. Please take what I say knowing that I'm just another patient. First, in choosing between and agonist or and antagonist, I recommend an antagonist (from what I learned in "Dr Patrick Walsh's Guide to...." Firmagon is available from ES without prior authorization, but it is an injection.
It seems to me that you have very solid justification for Orgovyx. First, the MRI assessment indicated PIRADS 4, which is high risk. Looking back at the NCCN Guideline (https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf), I could not find the exact terminology "a category 1, 2A, or 2B recommendation". Guide 1 (pdf page 31) would put your cancer - from the Gleason patterns - in grade group 3. Guide 2 (pdf page 33) describes tumor stages T1, T2a, T2b, and T2c, where 2c is more serious that T2b because the cancer is in both sides. Then in Guide 3 (pdf page 34), your risk group would be unfavorable intermediate because your PC has at least 2 of the listed characteristics. And finally, if your MO has prescribed short term ADT, which is good. (see question 9 on the PA form).
Again, trust your MO rather than my amateur assessment. I think that he/she is correct about "someone" at ES acting arbitrarily. I should also mention that I had a Decipher Prostate analysis of my positive specimens, which indicated high risk, and that may have influenced the decision at ES. Hope this helps.
Good luck with your ADT and with your treatments.
@georgemc For my biochemical recurrence, I received a six-month Eligard injection 3+ years ago. It was very effective at lowering my testosterone level, which rebounded to almost normal in less than a year. Side effects lasted more than six months, however. I did have hot flashes but they were more annoying than severe. I was tired and took naps but this may have had more to do with the radiation than the injection. After about 7-9 months I lost some but not all body hair, which did grow back. The most bothersome effect was frequent urination. I was peeing 20 times a day and 3-4 times per night. Even if I did not drink anything after 8pm, I was still waking up multiple times a night to visit the bathroom. I do not miss that at all. My PSA is still undetectable so fingers-crossed that I will never need ADT again.
@edwardbrown1 I am in the process of appealing the ExpressScripts denial of my doctor's request for pre-authorization of Orgovyx. The denial letter says "Coverage is provided in situations where the diagnosis is cited in the National Comprehensive Cancer Network (NCCN) guidelines as a category 1, 2A, or 2B recommendation." It appears the rationale for denying the request is that I fall into NCCN category 2c, in that I have involvement of both halves of the prostate, one is a RADS 4, 1.5ml lesion and the other a RADS 4, 0.7ml lesion. My biopsy involved 14 samples, 5 of which (3 on one side and 2 on the other) were "positive." One evaluated as Gleason 3+3=6 (Group 1), three evaluated as Gleason 4+3=7 (Group 3), and one evaluated as Gleason 3+4=7 (Group 2). Someone arbitrarily has identified these 3 categories as worthy of Orgovyx, while all others are not. My oncologist says such an arbitrary decision is not based upon medical considerations as far as he can see. The number and types of the specimens should be the the deciding medical consideration, not the side of the prostate on which they may have been found. Have you any suggestions as to how I might convince ExpressScripts that they should reverse their earlier denial? I would seriously consider buying Orgovyx "out of pocket," but at roughly $100/day for 4-5 months That is a stretch I wold prefer not to make. My onclogist is looking at starting with Eligard, then shifting, after a month, to another med (didn't catch the name of it, might have been Lupron), for an additional 3 months. Anyone out there have experiences with Eligard to share? Lupron?
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1 Reaction@georgemc Express Scripts/ TRICARE approved me for Orgovyx last fall with no issues. I would definitely request reconsideration. It may be that your RO or MO did not complete the form correctly. Question 4 asks if the diagnosis is advanced prostate cancer or other. If other, question 5 has a text block for the provider to write the diagnosis. (It cannot be approved for uses other than prostate cancer.) Then question 6 asks if it is NCCN category 1, 2A or 2B. If you're approved for proton radiation of your prostate, you must have had a positive biopsy indicating at least NCCN tumor stage T1 or T2a or T2b. In my case, the MRI indicated PIRADS 4 and the biopsy discovered 3 of 20 specimens at grade group 2.
I recommend Orgovyx. It has given me very few side effects, but more importantly to me, it knocks down testosterone levels within days - not weeks. And you might want to consult with a pharmacist at your local military pharmacy who could be more attuned to these pre-authorization forms. Good luck.
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2 ReactionsI've been taking Orgovyx for four months now, I'm currently planned for a nine-month round before my next ADT vacation. My previous two rounds of ADT were with Lupron, and Lupron with Abiraterone.
As for timing of taking Orgovyx, I just returned from a month in Southeast Asia with a 15 hour time difference from home. In trying to keep to taking the meds on a regular schedule -- every 24 hours, I had to adjust my timing (morning versus night). I found no difference in effects when taking the medication at different times of the day.
Hot flashes can be very intense, they walk right in un-announced and turn up my thermostat to super hot throughout the day and night. Caffeine or alcohol will increase the frequency -- but luckily they are avoidable.
I get fatigued easily and often during the day. My strength has diminished and my stamina for any excercise has been significantly reduced. I feel like I have aged 15 years.
I put on 10 pounds almost instantly. My weight off ADT is very consistent. I'm was very fit for a 69-year-old and excercised regularly. Physical activity is a challenge.
Sleep quality is poor, I get a lot less sleep and feel tired all day because of it. I wake up often and it can take a long time to get back to sleep.
Additionally I have lengthy vivid dreams most nights. Prior to ADT, I rarely dreamed (or remembered dreaming). And, the dreaming did not happen on Lupron.
I am hoping I can adjust to this new ADT-altered body over time.
I am scheduled to start accupuncture for my sleep issues next month. Has anyone else tried this?
One option to minimize symptoms from my GU oncologist: Gabapentin. I tried it and it made me feel groggy and listless the next day. I stopped taking it.
@georgemc The justification that I used was that I was a very good complier to taking my meds on time., Also, as a pharmacist, I said that I wanted drug levels on this med to stay the same day to day unlike Lupron that has variant levels as it is a long-acting med. Lupron has highs and lows during the month potentially causing more side effects. Good luck and keep appealing their decision until they get tired of you! Mike
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1 Reaction@ken1945 did you have other treatments or just the orgovyx?