First of all, thank you for your post and thank you for mentioning the pharmacy in Kentucky. I also am on Orgovyx and my out of pocket expense through my current specialty provider would be about $1,200/mo ($8k max out of pocket) if I wasn’t receiving financial aid for the drug. I will check them out in case I lose my financial aid in the future.

I’m sorry that you’re having the side effects that you’re having. I was counseled that exercise can lessen the side effects so that’s what I’ve been doing albeit for the 3 weeks since I started. I too have had some dizziness and brain fog plus but I’m also on Zytiga and wasn’t experiencing these SE until I added Zytiga.

As for the dosage being tailored to body weight that’s an appropriate question which I’ve wondered about myself. I assume that if the drug becomes more widely used Myovant may do a study to see if other dosages would be safe and appropriate.

Good luck on your journey.

Thanks for your post. I too have been on ORGOVYX (3 years now). Excellent results. I have Advanced Prostate Cancer. I have been having similar side effects. What i have noticed is that the side effects have increased over time. So i feel this is an incredibly powerful medication. Exercise seems to be the only thing that helps with the side effects i found. But it is a battle to continue to exercise because of the side effects of fatigue etc. i find that i have to adopt an attitude of “just do It” and ignore physical feelings of side effects. I regard exercise as a necessary “medication” good luck and take care

i was diagnosed with APC , high PSA, high gleason score, few spots in bones lit up during MRI, had biopsy of bone in hip area and found cancer cells . My doctor(Dana-Faber) began Lupron injections then I followed up with 4 chemo infusions, Followed by regular Lupron injections. PSA went down to 0.002. In 2021 switched from Lupron to Orgovyx. PSA still at 0.002 . Bloodwork and exam every 3 months
very short version of med history

I was diagnosed with a PSA level of 5.5 two years ago. Eight months earlier, it was 2.5. I wasn't feeling well, so I had a complete battery of tests, all of which came back negative. My doctor suggested running a PSA test, which I agreed to, and thus began my journey.

I had a prostatectomy on January 16, 2023. Four lymph nodes and the left seminal vesicles were positive and removed, along with a total of 19 lymph nodes but there was no distant spread Stage 4a. My PSA level was undetectable 8 weeks post-surgery and remained undetectable for the first 6 months. Then it started to rise slowly. When it reached 0.13. Off to the oncologist on April 9, 2024, and started Orgovyx.

Before starting radiation therapy, my PSA was undetectable again because of this drug I began radiation on April 23, 2024.

The side effects have been challenging: leakage, hot flashes, frequent night sweats, lack of sleep, elevated blood sugar, and low hemoglobin. The most concerning development was double vision, which began on May 31, 2024. My oncologist was alarmed and ordered a battery of tests, all of which came back negative, including an MRI of the brain and orbits.

My question is, has anyone experienced double vision as a side effect, which is listed on the Mayo Clinic site? How long did it take for normal vision to return? My ophthalmologist diagnosed it as palsy of the 6th cranial nerve and said it should take 4 to 6 weeks to recover (fingers crossed).

Lastly, my drug cost me $1100 first dose and has been consistent $603 for the refills, small price to pay for life. I'm 69 and hope to make many more b-days.