In praise of Orgovyx

Posted by northoftheborder @northoftheborder, Oct 7 4:33pm

I'm hardly an old vet here (my stage-4 prostate cancer was diagnosed just 3 years ago), but I've seen big changes in treatment even over that short time.

In my opinion, the biggest improvement has been Orgovyx. Getting a Firmagon injection was like having the flu, a stomach rash, and a fist-sized swollen reaction to a wasp bite ... Every. Single. Month.

The past six months on Orgovyx — just another daily pill — have been like night and day for my quality of life. I find it puzzling when I read people posting about how "awful" Orgovyx is, and then I remember that they're not comparing it to Firmagon but to life before ADT.

So maybe I am an old vet after all, since I'm comparing things to the bad old days (uphill in the snow both ways and all that). 😉

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I don’t understand why people get Firmagon. You can get a Lupron six months shot, they give it in the back of the thigh/hip and in my case I never even felt it. Does exactly the same as firmagon. They have one, three and four month shots as well. I think urologist like to give firmagon because they give it once a month and get people to come in and have insurance pay for it once a month.

Maybe somebody on Firmagon can see this and think twice.

The big advantage of Orgovyx is that your testosterone can return quicker after you stop taking it. It is pretty expensive, but insurance covers it for most people.

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Yes, that's a good point, and my life would have been much simpler if either of those had been an option for me.

The issue with Lupron is that it causes an initial testosterone surge, which wasn't a good idea for me when they'd just detected my cancer by way of a spinal metastatis that was growing rapidly and severly compressing my spine — my future was balanced on a knife edge, so we needed to bring my testosterone down ASAP. In 2021, Firmagon was still the only option in Canada for that (other than surgical castration).

Because Canada's a smaller market than the U.S. or E.U., Pfizer didn't bother starting the approval process for Orgovyx until later. Health Canada signed off on it about a year ago, and I was in the very first group of patients to have access to it earlier this year. My pharmacist hadn't even heard of it yet when I brought in my first prescription.

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@northoftheborder

Yes, that's a good point, and my life would have been much simpler if either of those had been an option for me.

The issue with Lupron is that it causes an initial testosterone surge, which wasn't a good idea for me when they'd just detected my cancer by way of a spinal metastatis that was growing rapidly and severly compressing my spine — my future was balanced on a knife edge, so we needed to bring my testosterone down ASAP. In 2021, Firmagon was still the only option in Canada for that (other than surgical castration).

Because Canada's a smaller market than the U.S. or E.U., Pfizer didn't bother starting the approval process for Orgovyx until later. Health Canada signed off on it about a year ago, and I was in the very first group of patients to have access to it earlier this year. My pharmacist hadn't even heard of it yet when I brought in my first prescription.

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In order to stop the Lupron PSA surge they give you biclutamide for two weeks before Lupron and then you don’t get the surge.

Your doctor should’ve known that, but urologist don’t know all that much compared to some oncologists.

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@jeffmarc

In order to stop the Lupron PSA surge they give you biclutamide for two weeks before Lupron and then you don’t get the surge.

Your doctor should’ve known that, but urologist don’t know all that much compared to some oncologists.

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A radiation oncologist in my case, in consultation with a medical oncologist, both at the Cancer Centre.

My memory's a bit hazy because I was in critical care recovering from 10+ hours of emergency spinal surgery with paralysis and a range of serious post-op complications (including an inability to eat), but I suspect they didn't want to wait two weeks or to introduce another drug— they needed to get my T down immediately, and in their experience, Firmagon was the best bet in my specific case. I suspect they were right: in the event, it reduced my PSA dramatically in a few weeks (from 67 at diagnosis), and brought it to undetectable in a couple of months.

And after that, with Firmagon+Apalutamide controlling my cancer so well, it wouldn't have made sense to risk switching until Orgovyx — another GnRH receptor antagonist, like Firmagon — became available here.

In any case, the outcome has been good. I just passed my 3rd anniversary yesterday, with no detectable recurrence.

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My side effects from Orgovyx have been quite tolerable. Hot flashes, fatigue, body aches, and brain fog have all been minimal. I have maintained some libido and I get through most days with little problem. I applied for and received a grant to cover my medication cost until I hit the catastrophic level so my out-of-pocket costs have been minimal.
I’m looking forward to faster recovery of testosterone and rebuilding loss muscle at the end of ADT.

Good luck to everyone who reads this on their journey with PCa!

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I've been getting Firmagon for 19 months, guess I'm used to it by now. Psa was 932 at the time, one month after starting, I started my chemo treatment. I've been seeing my Oncologist since day one. Last month he offered me a 3 month treatment. I go every month for blood work so said I'm good with the monthly. It's my forever treatment until it stops working. As for Orgovyx, I can't afford that, I did check. The other thing for me is not wanting to change when things are working right now. Best to all.

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@stevecando54

I've been getting Firmagon for 19 months, guess I'm used to it by now. Psa was 932 at the time, one month after starting, I started my chemo treatment. I've been seeing my Oncologist since day one. Last month he offered me a 3 month treatment. I go every month for blood work so said I'm good with the monthly. It's my forever treatment until it stops working. As for Orgovyx, I can't afford that, I did check. The other thing for me is not wanting to change when things are working right now. Best to all.

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I'm so sorry you're forced to make that choice. Here in Ontario, the cost of Orgovyx or Firmagon is about the same — about CA $325 (US $240) per month if not covered by insurance — so I wouldn't have to decide based on affordability even if I were paying for it myself.

The starting megadose of Firmagon costs a bit more (around CA $500, if I recall correctly), and I did pay for that three years ago, because my spouse's work didn't have insurance for prescription meds yet, and I wasn't enrolled in the Ontario Drug Benefit or the Trillium Drug Program (my family income that year was too high for either to help, because I'd been doing consulting work right up to the week before I was admitted to hospital).

It's interesting to hear another story of using a GnRH receptor antagonist (like Firmagon or Orgovyx) to bring down the testosterone quickly when the patient has a very high PSA, although yours was much higher than mine.

Is there any chance you could get on Pfizer's patient-access programme for Orgovyx in the U.S. (I'm not quite sure how things work down there)?

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@northoftheborder

I'm so sorry you're forced to make that choice. Here in Ontario, the cost of Orgovyx or Firmagon is about the same — about CA $325 (US $240) per month if not covered by insurance — so I wouldn't have to decide based on affordability even if I were paying for it myself.

The starting megadose of Firmagon costs a bit more (around CA $500, if I recall correctly), and I did pay for that three years ago, because my spouse's work didn't have insurance for prescription meds yet, and I wasn't enrolled in the Ontario Drug Benefit or the Trillium Drug Program (my family income that year was too high for either to help, because I'd been doing consulting work right up to the week before I was admitted to hospital).

It's interesting to hear another story of using a GnRH receptor antagonist (like Firmagon or Orgovyx) to bring down the testosterone quickly when the patient has a very high PSA, although yours was much higher than mine.

Is there any chance you could get on Pfizer's patient-access programme for Orgovyx in the U.S. (I'm not quite sure how things work down there)?

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I have no other ADT treatment to compare it to but so far into my 3rd month on Orgovyx, my side effects have been minimal🤞.
Some hot flashes but totally tolerable. Some blood work a bit awry but not overly so. Have consult in 2 days and praying they don’t take me off of it!

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@northoftheborder

I'm so sorry you're forced to make that choice. Here in Ontario, the cost of Orgovyx or Firmagon is about the same — about CA $325 (US $240) per month if not covered by insurance — so I wouldn't have to decide based on affordability even if I were paying for it myself.

The starting megadose of Firmagon costs a bit more (around CA $500, if I recall correctly), and I did pay for that three years ago, because my spouse's work didn't have insurance for prescription meds yet, and I wasn't enrolled in the Ontario Drug Benefit or the Trillium Drug Program (my family income that year was too high for either to help, because I'd been doing consulting work right up to the week before I was admitted to hospital).

It's interesting to hear another story of using a GnRH receptor antagonist (like Firmagon or Orgovyx) to bring down the testosterone quickly when the patient has a very high PSA, although yours was much higher than mine.

Is there any chance you could get on Pfizer's patient-access programme for Orgovyx in the U.S. (I'm not quite sure how things work down there)?

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Someone mentioned before if you get the treatment, my firmagon in the center, it's covered. I looked into when I retire, it would cost 800 a month for the Orgovyx but they say next year the cap would be 2 grand, so that is something to look into for me. I still get leary about changing anything when right now it's running okay. thanks for contributing options for us. Best to all.

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If you are on Medicare, the maximum will pay for all drugs. Next year is $2000. So if you pay for Orgovyx once it could be all. They don’t just count what you pay they also count what your provider pays for the $2000.

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