What's your experience with Orgovyx (relugolix)?

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.

Can you tell me more about the Reel Recovery Program?

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.

Thank you! It sounds amazing - informal and meaningful.

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.

@seasuite, did you have an oncology social worker help with the submission? Sometimes they can make headway where an individual cannot.

I'm not familiar with that role. Can you provide details on how to make contact?

Oncology social work is an often overlooked service offered at large cancer centers. @seasuite you may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Your oncologist or member of your cancer team can refer you to social work.

Definitely good to know thanks Colleen! I hope to only be on Orgovyx for four months but you never know what's around the bend. The last prescription they charged me 'only' $600, half the original co-pay. The problem is they never give you any clear information, no matter how many times and who you ask. After 40+ years of employer provided insurance and full benefits, I can only say that Medicare is vastly more complicated and difficult to navigate.

My Experience. When I first found out I wes scard sh..less. I read a lot and spent lots of time on discussion groups. I had a second opinion on my biopsy and it was downgraded. So make sure you get a second opinion from a reputable place. Had a PSMA that came back woth no spread outside the prostate. Orgovyx thus far 1 1/2 months in is very good. I'm 74 with Medicare/BC plan 65 and BC RX. My copay is just $15. I have had a few minor hot flashes lasting only seconds. Barely noticeable.
Helpful information might be that I'm Gleason 3+3 and 3+4 in two cores. I take .5 mg of Lexapro, B Complex and Vitamin D daily. I walk my dog about two miles per day and play tennis at least 3 times a week. So far I have not had to slow anything down.
Space Oar and fiducials put in this week. Very uncomfortable for 36 hours but then took my normal walk. Mold and CT simulation next week then on to SBRT a few weeks later.
The hardest part for me became the waiting. Even now, I can get specific dates for the SBRT. This makes it difficult to create a plan for where we will live during the process.
Hope this helps a bit.