$13K for 6 months of Orgovyx. Is it w... - Prostate Cancer N...

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$13K for 6 months of Orgovyx. Is it worth it?

Rams91 profile image
23 Replies

My RO wants me on 6 months of Orgovyx as part of my upcoming SRT. My private insurance has rejected Orgovyx coverage in favor of Eligard or Firmagon. RO says he filed an appeal and was rejected. I will be getting a one-month free supply from my RO and need to pay out of pocket for the rest at $2600 a month. Is Orgovyx really that different compared to getting a onetime alternative Shot, given the steep price? What if I need to continue for more than 6 months? I'm yet to contact the company but judging by information on their website, I'm not qualified for any discounts.

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Rams91
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23 Replies
Magnus1964 profile image
Magnus1964

Why Orgovyx. Have you been on other ADT drugs in the past? If not I see no reason to start you on a newer more expensive drug. The idea for an ADT drug before radiation is starve off the newer cancer cells before receiving the radiation. You need to question this decision.

Rams91 profile image
Rams91 in reply toMagnus1964

Thanks. First time going to be on ADT. RO was on the fence with the ADT for post RP salvage therapy, but with the decipher score at 0.53, he is advising to take it. He believes Orgovyx is better, but that was before the $13K price tag. I rather spend the money going on a nice European vacation if all I get is immediate on/off feature, as Tall_allen also alluded to. If it has less side effect compared to the shots on the heart or bones or blood sugar levels, I can probably convince myself to buy it instead.

JWS13 profile image
JWS13 in reply toRams91

it has less cardiac events and SE's..tolerable IF YOU EXERCISE WITH IT- just got finished 4 months yesterday.

Tall_Allen profile image
Tall_Allen

The major advantage of Orgovyx is that it starts and stops rapidly. Firmagon (monthly shots) also does.

Rams91 profile image
Rams91

Thanks TA. So major advantage is it can be stopped if side effects are too much to bear!

Concerned-wife profile image
Concerned-wife in reply toRams91

Read about testosterone recovery; I believe it is quicker so if you are only taking the drug for a short time, not for life, this would be important to you.

GSDF profile image
GSDF

Degarelix (Firmagon) and Relugolix (Orgovyx) are both "antagonist" ADTs whereas the other ADTs that come in shot form only (Lupron, Eligard), are "agonist" ... The difference has to do with the affect of the pituitary....

Lupron and the agonist ADTs actually cause an initial spike in testosterone before the rapid decline whereas the antagonist Firmagon and Orgovyx act immediately to shut down testosterone, thus the PSA levels.

I started out w/Firmagon and once I saw how effective it was I asked to be switched to Orgovyx, to which my M.O. complied. The change-over was seamless as far as side effects and efficacy...

But your concern of out of pocket cost, if the Firmagon is insurance covered and orgo isn't, the only difference IMHO is the every 28 day shot in the belly vs the daily small pill.... Hope this helps brother 🙂

Rams91 profile image
Rams91 in reply toGSDF

Thank you GSDF. I'll try to see if I can get a discount or a couple of freebees from the Orgovyx manufacturer. Otherwise, Firmagon it is. Hope the belly injection doesn't hurt too much.

Boywonder56 profile image
Boywonder56 in reply toRams91

I think like my eligard wich is given in me belly...its in the administration of shot.....ive read its suppose to take 45 seconds to administer....im lucky if they take 10.......wich results in a sore belly for cple days..

GSDF profile image
GSDF in reply toRams91

What Boywonder says is very true... The actual administration of the shot makes a lot of difference in how quickly the injection site heals... Also, many of the infusion centers aren't so familiar with Firmagon, as one nurse told me 90% of their ADT infusion pts get Lupron or Eligard ... So even the most tenured, competent infusion techs need refreshing...

As I recall, they need to take a fold of skin (fat) between thumb and forefinger and then insert the needle at a 90 degree angle and slowly, over the course of a minute or two, inject the Firmagon... One might think it probably makes little difference but when it was done correctly on me, I had very little discomfort , just a mild swelling and was totally healed within 2-3 days ...

Yet the few times when it was just jabbed in and injected like a flu shot, the injection site swelled up into a painful lump and I even developed a mild fever...

After a couple of those, I printed out the injection instructions (I found on Degarelix website) and the infusion techs were happy to follow them ... 👍

JohnInTheMiddle profile image
JohnInTheMiddle in reply toGSDF

The Firmagon injection should be at 45 degrees, according to all the instructions.

Vynbal profile image
Vynbal

I had Orgovyx - I have a rare unrelated heart rhythm issue, and so the ability to stop ADT within a few days if cardiac SE occured was vital. If you end up with Firmagon, I have heard that icing the injection site prior to injection will greatly reduce the discomfort.

1Ubspaine profile image
1Ubspaine

My insurance did the same and they accepted Firmagon which I took, my RO was fine with it. Had some side effects, but comes with territory.

BMT07 profile image
BMT07

I've been on Orgovyx for almost a month and so far no side effects. I work out every day as my doctor recommended and feel great. He said many of the side effects from Lupron don't wear off for some people, but the side effects of Orgovyx (if you have them) go away very quickly once you stop taking the pills. The studies also show it isn't a heart risk like Lupron and some other older drugs. So from my perspective I would argue it is worth the extra money. I would appeal an insurance denial since they will often push for the least expensive treatment regardless of patient QOL impact. Good luck.

cesces profile image
cesces in reply toBMT07

"The studies also show it isn't a heart risk like Lupron"

That's interesting. How big of a difference is it?

3276 profile image
3276 in reply tocesces

I am trying to get my RO to prescribe Orgolyx off label because of the heart risk issue with Lupron even though I have intermediate prostate cancer. (From the National Cancer Institute) "When the HERO trial investigators looked specifically at men who had a history of heart problems, the difference in the frequency of these cardiac side effects was even more stark: 17.8% in the leuprolide group versus 3.6% in the relugolix group" .cancer.gov/news-events/canc....

Boywonder56 profile image
Boywonder56

Also my onc wants me on xgeva for bone loss due to mets and osteopena ...but 1 . The cost 13k....i believe...and 2 another blow to the gut....i passed for now....

Rams91 profile image
Rams91

Thank you all for valuable comments. My concern for taking ADT in general is that I have osteopenia of the hip (T score -2.1), border line low hemoglobin and border line A1C. The MO who I consulted thought 'six months of Orgovyx' would not adversely affect my health and if so, it could be stopped. That was before denial of Orgovyx by the insurance company in spite of MO's appeal (I'm told). I'm yet to go back and ask if a Shot would have more risks. Wish I could get half a Firmagon injection every two weeks if it wasn't painful! :)

cesces profile image
cesces in reply toRams91

Once a month shots aren't so bad. Even once every 3 months.

Horse12888 profile image
Horse12888

It all depends on how miserable you become due to the SEs. You could get two 1-month Lupron injections and see how you're doing. If you're OK, just continue. Otherwise, which to Orgovyx, so your T recovers quickly at the end.

I would have happily paid $13K to feel good again in a matter of a few weeks rather than 5 - 6 months, but everyone's different.

I would also point out that a 6-month course on Lupron isn't a huge deal, because you can see light at the end of the tunnel. I was assigned 2 years, and about 8 months in I hated every day of being alive. I quit after a year, because I simply couldn't stand it any longer.

Everyone's different.

Cooolone profile image
Cooolone

Orgovyx isn't some magical pill... It's only advantage is as noted, the ability to start and stop with rapid reversal of levels as opposed to awaiting an injection to wear off. And if maybe there's family history with heart issues, or the patient directly. But Degarelix works just as well in this regard.

All ADT therapies have the same side effects practically... And Glucose control is the same regardless if Degarelix or Orgovyx is used... Well, for me anyways. Lol... The belly pain and swelling is annoying, but you get used to it. More annoying is the monthly shot, office visit itself.

Good luck!

Mike404 profile image
Mike404

I started on Orgovyx and got into the bridge program from Myovant while I appealed the insurance. That was four months. I decided not to pay out of pocket for the last two months, since my side effects were minor. I tried to get Firmagon, but UCLA (!) couldn’t find any. They only offered me Lupron. I ended up with two one month shots. The first one gave me hives and flu like body aches. I’m a couple weeks out from “the end” and my T level is <6. Undetectable. I hope it recovers. In retrospect, I wish I’d stayed on the Orgovyx.

j-o-h-n profile image
j-o-h-n

view this:

orgovyx.com/the-manual/reso...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/29/2023 7:39 PM DST

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