I have turned 65 and now medicare + plan C is asking $600 a month for Orgovx. My PSA has been at .6 after Cyberknife on my L2. I am trying to get assistance but in the meantime I started taking it every other day and Dr Oscar Goodman said that is ok. I have not taken it in 4-5 days. I have 4 pills left. Am I playing with fire?
I have been taking this plus Erleada but then stopped that one after two years per doctor. I still get that hot flashes and fatigue, body aches etc. Not the best quality of life on these things for now going on 4 years.
Anyone else have experience or comments in this regard?
Best to all of you and thank you.
Jim
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crony
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It is definitely NOT OK, in spite of what your MO believes. The Half-life is just 24 hours so you are getting insufficient amounts of the drug. You can get Firmagon or Lupron injections, under part B.
You need to take the pill everyday or it will not work properly. Don't know why you're getting bad advice. If you need financial assistance, reach out to the manufacturer. They may be able to help you.
I have a met in my L2. Cyberknife reduced the signal. It is the only location that lit on on my last PSMA. Stage four merely means it left the prostate. I had brachytherapy and it is gone there now
yes, you are playing with fire. You are only 65. Get a new doctor that specializes in prostate cancer and is a MO not urologist. You can get Lupron for free. Why stop Erleada?
When you have a met (L2) in the bone and anan otherwise negative PMSA scan it likely means you have many lesions that are too small to be seen by PMSA scan. The knife would not normally be expected to cure you. People in your situation do very well for many years on antitestostetone therapy. It has been demonstrated that your survival will be longer when ADT plus a Erleada or one of the other second generation testosterone blockers like Abiraterone. In fact I believe triplet therapy might be indicated but I am not an expert.
hi Grandpa. You sound pretty informed to me. My understanding of the PSMS scan is that any cancer lights up. I have had many bone scans, MRI's you name it, I had it. After cyberknife, my PSMA showed nothing new and a much lower illumination on the L-2. The narrative said they saw no other lesions what so ever. If they might still b there than, what's the point of the "new" technology w/ the PSMA scan?
They are better than anything we have but these lesions may only have 10 cells. We’ll never be able to detect them at that level. My brother had a PSA of 5 but a negative PMSA scan. Obviously he has lesions.
As others have said, you could get injections like Lupron covered under Part B instead. However, the government improved Your Part D drug plan for 2023 so that once you pay about $3300, you won’t need to pay more (catastrophic coverage level) if you decide to stay on the oral drug. In 2025 coverage will be even better.
Sounds like cost is an issue for you! I reached out to drug manufacturer because cost was an issue for me and they had a program to assist me with cost! Did you attempt that?
I have a new reply policy. If a poster's bio is void of details, age, country, etc then I am not going to bother replying. Asking for help here is a 2-way street. Here's looking at you Jewelrylady.
Do a search in Bing for the drug. It is now available in generic so manufacturer may no longer have a program! There are discounts and the drug dosage is critical. The difference in price between 250 mg and 500 mg is astounding. Average price for 30 tabs of 250 mg is $141.83. For 60 tabs of 500 mg it is $9,975.96!
But if you need 1000mg of abiraterone, you would need 4 pills of 250gm to get to 1000mg for 30 days (120 pills). That would be approximately $560 which is still a lot less than $9975!!!
I agree with the others that stopping is not an option. I was on Orgovyx for two years+ with a $10 monthly co-pay program with the manufacturer. Beyond that, I now have grants from two foundations that help a great deal.
My Orgovyx pharm provider instructed me take 2 to start off then one a day and any break in taking will need to start over with 2 then return to one/ day. That kinda tells me it leaves my system rather quick. But just my opinion on the last.
Self medicating... And your Oncologist agrees? Interesting!
For the matter, you'd be better off taking half a pill, rather then taking them half the time! Just an opinion and not in any way advocating doing it, just a thought.
See, as noted above, there is a defined amount of time the drug is present in your system. Taking it and then not taking it, allows the drugs to clear from your system and be absent. The whole idea is to have the drug present and do its work. But that can certainly lead us into considering what is more efficient, maximum tolerable dosage or minimally effective dosage. The metabolic side if things isn't often considered and trials always default to Maximum Tolerable Dosage.
I had an issue while taking Orgovyx, and in hindsight, was probably largely due to the combination of other drugs I was taking for metabolic disease, along with Orgovyx, causing some gastrointestinal issues. Orgovyx can cause this alone as well... That said, let's just say I was having bowel movements quite often, and suspected the pills didn't dwell very long in my system in order to be totally absorbed, effective, etc. And it only worked (Orgovyx) for less than a year in this environment before my T increased and as you would imagine, recurrence occured.
Now yes, there's always the conundrum of trying to determine "causation" or "association", but I would suffer to the former! My point is, seeing as the dosage circulating in my system was in all probability reduced, it wasn't such a good thing ;). And during that time, I had engaged my MO to inquire if we could test my blood to determine the level of drug present... Something to which he replied we just don't do. Lol... So there's that...
So anyways, I'm babbling now. And my point is to agree about not taking the pill on/off as it won't have the desired effect you're looking for. Either do, or don't, but know what comes with it. Because unless you can test to determine the amount of drug circulating within your system, it's just shooting blindly and rolling the dice so to say...
And also, why not the injectable drugs? Once my Orgovyx stopped working I switched to Degarelix and it stabilized my PSA, we added 2nd generation lutamide (Darolutamide) and that dropped my PSA back to undetectable levels! Knock on wood, and has been holding since!
Lastly, and for me, I've always discussed this point with my care team, and that is, let's discuss what'll work best, and THEN discuss payment or figure out how to fund it. And not allow $ to be the driving decision maker. Of course, that's just me... And not easily said for everyone as we all have different issues to consider. Financial Anxiety is real and a major issue for cancer patients! But there are channels available to help, even the drug maker themselves. Have you checked their website? Have your team reach out to them as my nurse did and got my co-pay to $10 per month at the time! Yes, $10...
This is all part of advocating for your own care, you must be active and energetic in all facet's of the game!
Thank you very much for taking the time to write to me. Honestly with all the hot flashes at night, sweating, then feeling cold, it wreaks havoc on my quality of life. I am weary of it. Yes, I take gabapentin and other thing but it doesn't seem to help much. I just want to sleep
i was on OGOROVYX for 45 days. Due to elevated liver enzymes, my MO changed to Eligarde 2 weeks ago. No more hot flashes, but the fatique has been a problem. Have unused pills if needed.
Hi Tom, I finally called the Orgovyx line and they said I do not qualify for the assistance program. Wow, just wow. I hope you are home doing better. -Jim
If someone will be permanently on testosterone suppression, there is another option no doctor talks about. A bilateral orchiectomy will remove the twin sources of testosterone permanently. You never again need to take a pill or shot to suppress testosterone. It's permanent, with no further cost.
The surgery is well-known and simple. Recovery takes a week or so. I had this done over 4 years ago, and am very pleased with the outcome.
Doctors don't offer it because many men simply won't do it, no matter what. Also, doctors and Big Pharma lose that sweet, sweet revenue stream from daily pills, or monthly injections.
Surprisingly comfortable, I've found. I wish I could get more guys to understand this. I've been quite unsuccessful. It's odd. I guess being on chemical castration with drugs lets people think they have some control, that it's not really "permanent", even when it is.
If you are only on an injection that theory is accurate. If you are on Lupron as well as a drug like abiraterone or Xtandi because Psa started to climb the pills will still be required.
Certainly. Those are the second-tier hormonals. But they're also predicated on the foundation of eliminated testosterone. Surgical castration (dramatic sounding term, but that's what it is), permanently eliminates that. So the eventual need for second-tier hormonals may be put off for a long time, but in any event the basic elimination of testosterone is always needed.
That's good, and expected, while you're on drugs like Orgovyx, Lupron, and the like. To keep it there requires ongoing use of those drugs, at considerable expense. Office charges, pharmaceuticals, it all adds up.
The second-tier drugs are usually used when the PSA starts rising even with fully-suppressed testosterone from those first-tier drugs. If on is on Orgovyx, and the PSA starts rising, they'll add other things, but they'll always continue the Orgovyx.
Orgovyx is great for people on limited-duration ADT, say a six month, or a two year course, as part of primary therapy. My comments are meant for those who are recurrent, metastatic, and will be on ADT forever.
How much did it cost you with good Rx? Did you have to get Abiraterone from a specialty pharmacy or could CVS supply it using Good RX. We are dealing with this now. My husband was getting Abiraterone covered by BioPlus, but his grant ran out and by the time he was going to reapply, they had closed for new application. Mark Cuban has a drug company we may have to look into.
I got it at the pharmacy at Shaw's in Boston. You need to call or go in to talk to the pharmacist who then ordered it. It was not that hard. Luckily I was never going to be on it for more 2 years. I am off now
The price of these drugs amounts to insult to injury....so if you can get them for free is gives you peace of mind. Plus that stuff really works well. Good luck.
My doctor applied for orgovyx and myself it wasn't a long wait and get my scrip by fedex i have been told after 4 day wait after you started,{ fedex lost one delivery} to start over with 2 pills on first dose, my opinion is to wait for approval and start from scratch again.
I’m on xtandi now since Dec 2016. I don’t qualify for the discounted drug plan. My part ( drug ) plan is paying the difference between $16500.00 per months d my part of D. $750.00. Hard to swallow but I don’t want to use my burial plot anytime soon
Hi Larry, look around for other programs. There's a guy in my PC group who has millions in stock but low income and he gets his Xtandi for free from some not for profit in Buffalo, NY
Orgovyx is horrible. They tried giving it to me before I realized there is such a better path. Of course I can't elaborate on here due to the monitoring with monetization on here. It gets frustrating at times.
crony, my husband wanted me to reply to you as he is starting on his third year on Orgovyx and we couldn't afford our co-pay either. He applied for a grant with the PAN (Patient Access Network) Foundation and has been approved each year, thankfully. This year they ran out of funds, but he was placed on the waiting list and after the first of this year, more funds were received so he was approved. He wanted me to suggest that you go ahead and apply online because even if it is closed at the present time, you will get on the waiting list. You can, as suggested by others, go to the injections made by other companies and my husband and I beg you to do two things. 1) Find another doctor who will treat you as a person and give you the very medical best care and 2) Go with the injections if you cannot get the Orgovyx but please please don't continue doing nothing putting your life in jeopardy! My husband is 78, had his robotic prostatectomy in 2016 and even though he had a metastasis in late 2023 with radiation and is now also on Abiraterone with prednisone, his team of doctors keep a close watch on him, plus he has undergone genetic testing. You deserve the same close attention as any other man and at the rather young age of 65, you have every reason to expect and to receive quality health care for many years to come, so don't give up! This group doesn't know me as I rarely comment and never post, but they are the most caring and knowledgeable people willing to share and advise. I could not stay silent when I saw your post and simply wanted to help in some small way. Stay strong and God bless you and all here on this forum.
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