Did you use Orgovyx with radiation, and did your Medicare Part D or Advantage plan cover it ?

[maley2711]

I'm hoping to learn what roadblocks anyone encountered in asking to use Orgovyx instead of Lupron, etc as part of radiation treatment. Resistance from prescribing ROs? Problems with Part D drug coverage ? Advantage plans...Kaiser , etc............that would and wouldn't cover at least some of the $2700/mo cost?

Did any ROs actually advise using Orgovyx instead of Lupron, etc? Did briefly discuss this topic with my current Kaiser RO, and he correctly mentioned that all studies of effectiveness of ADT + RT were based on Lupron, etc.......so 12 months of Lupron may not be the number of months that orgovyx should be used to achieve the same effectiveness. T remains low much longer after 12 months of Lupron than after 12 months of Orgovyx.

Thanks for your help with this!!!

Dale

[Jpburns]

I am currently taking Orgovyx, and am nearly finished with my EBRT fractions (today is 24 out of 28, yay!). My insurance (Ambetter) tried to cut off my Orgovyx, despite me taking it since December. They wanted me to suddenly (in the middle of RT) to start getting shots (forget which… maybe Firmagon?), but my urologist talked them into one more 30-day supply. I’m guessing I’ll have to get the shot in the future. Not on Medicare yet (start in June) so appreciate any suggestions regarding part D plans.

[maley2711 in reply to Jpburns]

Thanks JP ! Yes, they want to reduce their costs......from my research , looks like Orgovyx might cost $1000 more per month....balanced against benefits? Did your urologist mention the puzzle of how many months of Orgovyx would produce the same results as 6, 12,18, etc months of a shot.

As you know, there is faster recovery of T with Orgovyx......ie a man likely will remain castrate for a longer time after cessation of the shots vs cessation of Orgovyx......will that impact long-term efficacy of radiation?? No one really knows IMO.....no studies that know of?

What has been your experience re side effects with Orgovyx????

Yes, I am hoping one or more men will let us know their experience with Part D for radiation plus Orgovyx!!!

[Jpburns in reply to maley2711]

More like $2700/month for Orgovyx. So far, paid by insurance. Side effects: hot flashes, loss of muscle tone, some brain fog.

[vintage42 in reply to maley2711]

"... hoping one or more men will let us know their experience with Part D for radiation plus Orgovyx."

Prosatate radiation in 2021, then pelvic node radiation in 2023, with a couple of PSMA scans, and started Orgovyx in Dec 2023. No side effects from any of all that, except maybe a little brain fog recently. Am on Medicare with Blue Cross Supplement. Everything has been paid for except Orgovyx is costing $75/month.

[lakeheadguy]

I had 37 radiation treatments for prostate cancer. I had 2 treatmenst of hormone therapy for prostate cancer.

You may receive hormone therapy before undergoing radiotherapy to increase the chance of successful treatment. Hormone therapy may also be recommended after radiotherapy to reduce the chances of cancerous cells returning. Short-term effects of radiotherapy can include: discomfort around your bottom.

7 years post treatment developed radiation proctitis (nasty stuff) Beware this kills part of your intestines (mine both small and large). Know what complications can develop before you take action. I am cancer free to date. Doc following me for 10 years post trteatment

[CBRD]

I have only been on Orgovyx for two weeks. In my research, and in speaking with various Radiologists and MO's, there are a few advantages of Orgovyx vs. Lupron for localized PCa. First, Lupron is stronger than Orgovyx. It takes a little longer for Lupron to take full effect than Orogvyx, and when you stop taking Lupron, it takes longer to get back to normal with Lupron than it does with Orgovyx. In addition, for localized PCa the ADT is taken as a compliment to the radiation treatment, which is shown to improve outcomes. So, if you find that you are having trouble tolerating the effects of the ADT treatment and want to stop taking it after a couple of months, it is easier to do so with the Orgovyx because Orgovyx is taken as a pill on a daily basis. Lupron, on the other hand is given as a (painful) shot which is administered once per month or once per three months, so stopping taking it is not as easy when you are given a one to three month dosage. As for insurance, believe it or not, my insurance company, United Health, approved the daily dosage of Orgovyx for 6 months. However, they did not approve the initial dosage for the first day only, called the "loading dose", which was three pills instead of one. This one snafu held up the dispensing of the medication at all for around three weeks. As I was fighting with the insurance company, I suggested that they just dispense the daily dose, and I'll take an extra two pills on my own the first day and short myself two days at the back end of the 6-month period, but they said all or nothing, so nothing was dispensed. I then suggested that I will pay out of pocket for the extra two pills, but they still said no. Finally, when my MO spoke with the insurance company, they finally acquiesced and dispensed it.

While it's only been two weeks, I have been tolerating it fairly well. The first night, with the loading dose, was pretty rough on me - nausea, diarrhea, then the terrible night sweats. It lasted about 30 minutes, and then I was fine. Since then, I hardly notice that I am on it - I get an occasional hot sweat, but not that bad. I have started a workout routine to counteract the fatigue, possible loss of some muscle mass and bone density, and other side effects, which for me, working out is the worst part, because I HATE working out. But, the weight training around three days a week and some cardio one or two days a week, has made me feel much better and in fact, sometimes I feel better than I felt before I started the ADT. I also have been taking vitamin D3 to counteract, to some extent the possible loss of bone density. (I take the D3 along with vitamin K2 for additional health benefits).

I hope this is helpful to you. I am doing the proton beam therapy, 26 sessions, not sure which you are doing, proton or photon. Good luck and keep us apprised of your journey and your progress.

[CBRD in reply to CBRD]

One other comment. Once I settled on doing proton beam therapy, I interviewed three radiologists - Head radiologist with University of Miami/Sylvester cancer center (I live in Miami), the head radiologist for proton therapy with University of Florida in Jacksonville, and the head of the proton facility at Baptist hospital/Miami Cancer Institute in South Miami. All three recommended that I take Orgovyx. (BTW, if logistics were not an issue, I would have chosen U of Florida. I found that facility, headed by Dr. Mendenhall and his wife, also a radiologist, to be the most impressive of all of them, including Mayo in Rochester, MN. However, based mostly on logistics, I am going with UofM/Sylvester)

[Jplew]

After my radiation doctor put me on Orgyvxy. I had triple by-pass surgery a few months before and with heart problems, Orgyvxy is one of the better ones. I have been on it for two years and doing quite well. Have been very fortunate the drug has cost me nothing out of pocket. I wish you the best! Hang in there.