Unexpected early end to ADT

[Prostateless2020]

I have been on Orgovyx for 14 months. Intended to complete 18 months and then stop. When I re-applied to the Orgovyx Patient Assistance Program for the 2024 year, I provided my 2022 tax return. The reviewer would not accept it and asked for my 2023 tax return, which, being self employed, will not be ready until April 15th. She dug her heels in and said, sorry, no 2023 return, no approval. This is a new policy (company-wide, or reviewer interpretation, IDK) as compared to last year, when I provided my 2021 return for the 2023 year and was accepted.

So basically, I am ending my ADT 4 months earlier than originally planned. Orgovyx has kept my PSA at <.05 UNDETECTABLE for all of the 14 months, with mostly tolerable side effects. Muscle loss, fatigue, brain fog and hot flashes. At this point with only a four month window, I am not willing to move over to Lupron or the like for fear of it causing more harm than good.

As I wrestled with this decision, the thought of getting back to who I was before the ADT started seemed pretty damn good! And I am motivated and excited to rebuild my body and mind.

Thoughts?

[FinnO]

My post was partially deleted because I spoke truth about the growing essential care affordability problem for American citizens. I received no contact prior to censorship action as called for in the moderation rules..... just poof...... gone. Post all or post none.

[cscmetsfacil]

I was just approved by Myovant for Orgovyx financial aid based on whatever records they pulled. I did not have to submit anything new as I was getting aid last year as well. I would push back. That said, if you have stopped and were not taking other drugs, such as Zytiga and Prednisone, be sure that your Medical Oncologist knows this and is helping you monitor. Also, you may want to get a bone density test now (Dexa scan) to establish what your bone health is after 14 months of Orgovyx. As compared with a year of Lupron where my bone density got worse, and then better with a year off ADT, a year of Orgovyx mono therapy left me with bones actually slightly stronger, even with undetectable testosterone and PSA for a year. Finally, it appears that wherever you are getting your lab work, their lowest threshold is 0.05. There are better tests. LabCorp has an ultra-sensitive PSA test that measures to 0.006, the lowest I have found. I test T and PSA monthly. It can be helpful to be tracking how quickly you T comes back and then how your PSA responds. If you have a more aggressive cancer, like me, monthly testing may give you some peace of mind. Best of luck, and push back on the Orgovyx support!

[Murk]

IMO, I would ask your request to level up and discuss with a Manager and your request be reviewed and elevated to a senior level and be reconsidered.

Also Onco360 (onco360.com) has a policy of providing a 30 day trial to bridge you and then you can use them going forward as you are asking for reconsideration.

One month supply of Orgovyx is $3100.00 US so worse case you have to buy the last two months.

[JTrack]

What about going with Firmagon until you get approved for the Orgovyx? I understand that it's a lot easier than Lupron but doc's push the Lupron because they make more money.

[janebob99]

You know what I'm going to say. Try estrogen patch therapy. It's very cheap and effectively reduces testosterone to castration levels, but without the bad side effects of Lupron. The only negative side effect is enlarged breasts in some (but not all) men. Search for my posts on "estrogen". If you send me a private chat message with your email I will send you 10 papers on estrogen patch therapy.

Bob

Hormones vs time for estrogen patch therapy

[janebob99]

Here's some plots comparing bone loss rates for estrogen patch therapy vs Lupron ADT.

BMD versus time for estrogen patch therapy vs Lupron