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What's your experience with Orgovyx (relugolix)?
Prostate Cancer | Last Active: Mar 17 5:59pm | Replies (277)Comment receiving replies
@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?
Replies to "@edwardbrown1 I am in the process of appealing the ExpressScripts denial of my doctor's request for..."
@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.
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@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.