Well, D-day (or maybe O-day) has arrived (thank you FED-X). I'm about to do a swan dive into my battle against my PCa. After a week of searching for this stuff, my clinic found it in Louisville Kentucky at a pharmacy called Onco360. Not exactly a neighborhood corner market with me living on an island just north of Seattle. I'm providing this info for others exploring options other than Lupron as first treatment. My radiologist suggested Orgovyx as an alternative to Lupron as I would have more control of dosing. Basically, the day you stop taking the pills is the day your body begins to recover. My December PSA test came in at 16, up from 8.5 in May of 2023. My conclusion is that my cancer is slowly growing. So, I've decided to pursue "IHT," Intermittent Hormone Therapy, six months on, twelve months off, repeat. My oncologist sort of shrugged at this, but trying to get my PSA to zero is not my objective. That pursuit creates the risk of becoming castration-resistant, from what I've learned by reading case studies. The treatment therapies must get stronger and stronger after that. So I'm prepared to live with the tumors but slow their growth. My IG/IMRT will begin in May, about 2.5 months from now--the minimum time my radiologist recommended before starting RT. She's going to hit the prostate and lymph nodes over 28 sessions at an intermediate dosage. That translates into 3000 miles of driving. One other thing about Orgovyx, while it is purported to have fewer side effects, it's also expensive. My medicare prescription plan, an adjunct of my Medigap-G plan, covers only part of the cost. It's considered a Tier 5 drug, I was told. My monthly costs will be $720, so my six-month treatment will cost $4320. Next up (in a week) will be an interview with the doctor who will install a SpaceOAR, another thing my RO recommends. Hopefully, medicare will cover that. Now, I need to open the bottle and take my first three capsules. One last thing, giant shout-outs to everyone on this website for sharing the good, the bad, the ugly and the downright heartbreaking news concerning this disease we are fighting. I tear up reading so of them--and I haven't even started my ADT. Jeez, what's coming?
Staring at my unopened bottle of Orgo... - Advanced Prostate...
Staring at my unopened bottle of Orgovyx
Why 3 capsules?
The treatment protocol required the initial three to load up the body quickly. The one --day afterwards keep the level high. your body eliminates Orgovyx swiftly and requires a daily boost at the same time.
I missed the 3 tablets to begin instruction. I was just coming off a long ADT holiday and immediately resumed Abi cause I already had a supply in hand. By the time my orgovyx was approved and delivered my PSA was back down to undetectable. I started with one orgovyx tablet per day.
I’m a little further down the road than you. Starting my 3rd month of Orgovyx. Not horrible; hot flashes and some brain fog. Lowered libido? Not one of my big concerns right now.
Starting 28 fractions of EBRT in a week and a half. Pelvis + prostate + lymph glands.
I was on it for seven months and stopped in October 2023. After HDR Brachy and EBRT done last year in April PSA is 0.02 down from 0.03 last month. My testosterone has almost doubled in the last month from 96 to present as of this week to 171. My GS was 9.
So at least from my experience Orgovyx works as advertised.
Sorry, 0.03 down to 0.02 from three months ago.
couple of things to consider is getting a germline and somatic genetic test done.
Also get a good MO to manage your care.
Dexa scan would be nice for baseline.
Look into BAT with an ARi like darolutamide.
I think i read somewhere that the max it will cost you for prescriptions will be $3,000/year but it might start in 2025.
So you're at about 7 months doubling time from May to Dec.
In 2017 My top surgeon at world famous US hospital said would take out my prostate regardless if he found spread to lymph nodes. To remove source of prostate cancer, and the source of it's spread
I did surgery for the best chances at survival. Can always have radiation after surgery, very difficult the other way around.
Surgery is no walk in the park by any means. Long recovery of urinary control. I describe radiation as a walk in the park in comparison.
I did 4 months of lupron ( because there was a rush to get me on lupron) but I halted it after that first shot to be able to let my PSA rise for imaging. PSA was 2.3 six weeks after RP, and dropped to 0.1 after 4 months of Lupron. Slow drops in PSA are a better prognosis than fast drops in PSA.
At PSA of 3.8 a few years later, I had successful IMRT PB & whole pelvis to 5 spots of PC in pelvic, none to bone. Two years of lupron, with final one month injection June 2021. PSA dropped to less than <0 01
PSA rose then over 2+ years to 1.8 before PSMA found positive single lymph node in non radiated area of pelvis.
Had SBRT to it 3 sessions three days in a row, three months ago. PSA has been dropping, down to 0.868 then 0.635 so far, over two PSA tests. Understand it can and hopefully will continue dropping for up to a year.
Of course hopefully PSA reduces to <0.006 and stays there. Using LabCorp ultrasenitive PSA tests.
My goal has been to attack and kill PC not just put it to sleep until castrat resistance occurs. ADT so diminishes quality of life I have stayed off it as long as possible. I hope to never need it again, or push it off as far as possible while I continue to attack and kill as needed.
My life centers around athletics and ADT diminished that greatly as well as my general quality of life.
Currently I am extremely fit and performing at extremely high levels of performance off ADT.
If I were to need to go on ADT, I would seriously consider taking the route of one of our US members in the Philippines (Ron) , who used a estrogen cream, or patch if necessary, as my ADT.
Do you have contact info for Ron, he seems to have left this board.
TIA
I was wondering about him.
At your service lol. Tell him I said hello.
healthunlocked.com/user/E2-Guy
Thanks Soups
I sent him a message, I actually had that link had just forgot about it.
Brain Fog in action!
I am now paying Coco $1 per word when I get stuck and can not finish a sentence or thought. When she gets to $5 we play a game of 8 ball double or nothing It is a major revenue stream for her.😎
Major revenue stream lol. Yea me too.
Thanks for that info, TJ. I was told by my RO and MO that surgery isn't recommended after PCa has escaped the prostate. I didn't argue as I've read it can have significant deleterious effects on Qol. I was also told that PCa is rarely "cured." It's just held at bay until something else gets us. You didn't mention your age, but I know younger people more readily opt for surgery because of longer remission times, potentially. Anyway, we share the same concerns for Qol, which is why I opted for Orgovyx for my first ADT therapy. ADT patches sound interesting, Best wishes to you.
In 2024, after paying the initial deductible, a person on Medicare will pay 25 percent of drug costs. They will have a cap of about $3,250 and will no longer pay five percent of drug costs in the catastrophic phase. In 2025, after paying the initial deductible, a person on Medicare will pay 25 percent of drug costs. ( copied from Internet)
You can search the internet and read more about this good change in Medicare.
Thanks for that info. I'll check with my plan and get the details. Best wishes to you and your husband.
Coincidentally, I am in Louisville, KY, and in a few hours will sign for my third monthly FedEx shipment of Orgovyx from the specialty pharmacy Onco360. Onco360 has an office here, but is headquartered in Waltham, MA, and ships the Orgovyx from there. It costs $75/month on my Medicare plus Blue Cross supplement plan. Its side effects have been almost imperceptible while it dropped my PSA from 3.78 to 0.38 in one month.
Vintage, it was the same pharmacy that shipped my Org to me. My clinic said all shipments of cancer drugs they prescribe are mailed from "Specialty" pharmacies. Looks like I need to upgrade my Part D supplement plan next year. Mine is run by Aetna Silverscript Supersaver. 
My wife and I never paid much attention to the drug plan because we've never been on any until this year. I was told one can appeal to the pharma co. for special pricing based on one's income. Doubt we would qualify. I'm encouraged by your lack of SEs.
Before you sign up for Part D, make sure your meds are covered and your costs
Never had meds before, so I'm a little late for that. I need an amped-up Part D--probably something that will have a real premium rather than the $2/mo I pay now on my Aetna plan. Seriously.
I'm about 6 weeks into a Zytiga/Prednisone/Orgovyx regimen, with IGRT to happen in the May timeframe. My S.E. so far have been excess sweating and occasionally cannot get back to sleep (perhaps from the steroid?).... I'm pretty much a 'gym rat', so hopefully all the exersize and weightlifting will help a bit with the side effects. I realize I'm 'early on' in all of this, so it might change (a lot)......Best of luck !!!!
By everything said, looks like I'll need to spend more time on my rowing machine. We might be having IGRT in the same time frame. Ditto on the luck!
I echo what someone said above: "Get a good MO to manage your care." You have a couple of misconceptions, e.g., accelerating castrate resistance, and the use if intermittent ADT.
In any case, best of luck. Many guys experience few/mild SEs.
I have been taking Orgovyx for five weeks now. I have experienced most of the side effects mention, but only at a level of 1 or 2 out of 10 (medical term here, heh, heh). They have been manageable for me.
Important: Work out in the gym regularly and keep your mind stimulated. Several people here have turned to the piano, some starting as rank beginners.
Please have a discussion with the special pharmacy that supplied your Orgovyx. Mine checked out special grants and help possibilities. I now have a dispensation from the makers of the drug and will not pay anything for a year. I think you can do better than $720 a month.
I need to do that!
I also had 28 sessions, SpacOAR and traveled about 3000 miles. I am sure that the SpacOAR saved me from a lot of damage. That was 6/2020. Still on Lupron and PSA <0.001.
Very encouraging. Hope to have the same experience.
Our journey sounds similar. My psa at diagnosis (7/14/22) was 16.6 (jumped to 19.3 after biopsies). I started Orgovyx 7/20/22 (very handy from the MDACC pharmacy). They suggested I apply to the Healthwell Foundation who then paid my $998.96 1st copay. My psa dropped to 8.9 by 8/15/22, 1.6 by 9/21/22, and 0.8 by 11/14/22. Spaceoar and fiducials on 11/15/22 and the first of 38 IMPT treatments was 12/2/22. By 12/29/22 my psa was at 0.1 and has been undetectable since then. I started apalutamide on 10/12/22 at suggestion from my MO. (Another 1279.78 monthly copay). I will stop Orgovyx and Erleada in July '24 after 24 months. My one shot at a "cure" was to hit it hard with the radiation therapy and 24 months of ADT and I did not hesitate to grab it. Two other sources for copay assistance with Orgovyx are the Pan Foundation and the Patient Advocate Foundation. Now in 2024 with traditional medicare and part D your total annual out of pocket is $8000 which equates to about $3200 max out of your pocket. Yes, I have hot flashes, some weight gain, occasional word recall issues, and other bothersome side effects, but I'm prepared to "do the time" to potentially affect a cure. Do yourself a favor and start or keep exercising NOW.
I suggest you have a plan B for staying nearby if driving becomes unreasonable. Due to bowel issues I had shortly after my treatments started, I could not have handled driving very far to/from my treatments. Several of my new "brothers" at the proton center did the same thing even those from Texas. I even thought about flying weekly to Texas, but I could not have handled that either. My drive from home was 500 miles each way, so my wife and I rented a small apartment a few blocks from the MDACC proton center for 2 months during treatment. We rented a wonderful furnished apartment at a discounted rate by InSpirit Patient Housing, an outreach program by several Houston churches (Memorial Drive Presbyterian in our case). It was a godsend and calming respite as things worked out, to be in clean nice apartment overlooking the pool and palm trees only a few minutes away from the treatment center. The treatment schedule moved about some and it was easy to go early or late as needed. Like the copay foundations, you have to apply and basically get lucky when funds (or apartments) are available. You might check Joes House for discounted rates near your cancer center.
Feel free to message me with any questions or concerns.
occasional word recall issues,
Brain Fog in action! I can relate...
I am now paying Coco $1 per word when I get stuck and can not finish a sentence or thought. When she gets to $5 we play a game of 8 ball double or nothing It is a major revenue stream for her.😎
My wife has similar issues. Together we can carry on one side of a conversation pretty good! Sort of like playing charades with verbal cues.
That's all very helpful information, hfl20. I've wondered about whether there will be any driving issues. My RO also suggested finding a nearby rental just in case. You've had quite the travels for your treatment. I'm never going to complain again. Thanks for the tips and best wishes!
I drove for the first appointment and realized that the Houston traffic was anything but calming so I flew non-stop and uber'd a few times, then drove again for the 2 months of RT. My worst fear then was covid since that would disrupt and really screw up my treatments. MDACC has very strict covid policies and mandatory masking since the entire facility (20,000 employees) is potentially treating some very sick people and I was tested a day before treatment started. At that time (later 2022), I was usually the only one in the airports and planes wearing a mask. My initial wait time was going to be 7 months for IMPT, but someone cancelled and I got moved up to 5 months. I did learn later that rather than stopping in the middle of IMPT, they would have possibly switched me to IMRT in single treatment room setup and used for covid patients late at night. A hazmat sort of handling I assume. Best wishes to you. Just take it day by day. I started mindfulness and other meditation practices to get through the many needle sticks, scans, etc.
If you're tearing up now just wait until you get a couple months into ADT. 😉 14mos so far on Orgovyx and I'm glad I'm on it (as compared to Lupron). No T flare to counteract and it ramps up/down quickly (e.g. within days) if you need to. Never had hot flashes but that could be more due to a very active lifestyle. All the normal SEs like mood changes but so far no metabolic issues showing up. Aside from the unavoidable SEs my biggest chores have been staying disciplined enough to take it daily and stay on top of coordinating the delivery of refills to mesh with life (e.g. be ahead of the game if going on vacation). I find Onco360 does a pretty good job facilitating. Yes it's expensive but new/better drugs aren't created by gnomes that work for free. Good luck!
You mean we pay those damn little creeps.....always looking for that rainbow pot of gold....
Good Luck, Good Health and Good Humor.
j-o-h-n
Appreciate your comments, FinnO. And, I get the discipline issue. I feel as though I'm entering a whole different (new?) life with PCa. I'm moving from denial to acceptance and that, in a way, has been oddly comforting. Stories and reports by fellow warriors on this website help immensely. I'm more able now to talk about my PCa with close acquaintances although, I haven't even told my children yet. Just haven't found the right moment. It's not easy to call them up and say "Hey, guess what...." They will be very upset before I can explain that it's a manageable condition. Lots to think about. Thanks and best wishes!
Hey Mab, no worries. I found that being on this forum helps make the adjustment as smooth as possible. Lots of experience to be found here. As far as telling others about your PCa do what works for you because you’re the only one with skin in this game. I did not tell my family for a bit as it took me time to get my head back on straight. As others have suggested I would add a good MO to the treatment team. Oh and I had thought only my Nubeqa had co-pay assistance but the Orgovyx does too (orgovyx.com/cost-and-support/). I hope it applies to your situation. Sad thing is if our gubmint put its citizens first we’d never have a copay for a cancer drug. ¯\_(ツ)_/¯
My husband started Orgovyx 6 weeks ago and has had very few side effects. Maybe a bit more emotional than normal but his best friend passed away unexpectedly 2 weeks ago (not PCa) so I am thinking that was a normal response. We bike 20 miles a day and he enjoys playing soccer daily with our grand kids who we are visiting for the winter. He is also set to start salvage radiation when we get back to upstate NY in April. Keep us posted on your progress regarding radiation and I will share his.,too.
PS Our Orgovyx copay was $1000/ mo but University of Rochester has a program that helps all prostate cancer patients with their Co-pays, so we pay $200/ month. As soon as his PSA rose to biochemical recurrence levels, he was followed by a radiation oncologist at U of R. That office is the one that orders the Orgovyx and arranged the co pay assistance. However, even without that, I thought Medicare prescription plans had a cap so hopefully you will get by without paying the whole $4320. 🤞🤞Perhaps others can chime in on that part.
Thanks shihtzu. I think you're right and someone else mentioned the same thing. There is an upper limit on the co-pay. Need more time to research. Funny, everyone I spoke to from clinic to pharmacy seemed embarrassed at how much the drug cost. As soon as it gets warmer here in the PNW, I'm moving from rowing to biking. Best wishes to you and your husband.
Mababy,
I receive Orgovyx at no cost Xtandi too.
go their website download their assistance application, follow their direction.
My M.O. did not put me on Orgovyx cause he can't pronounce it....
Good Luck, Good Health and Good Humor.
j-o-h-n
Check with your Medicare...it has changed in 2024 and again in 2025. My husband just started Orgovyx this month and the most you will have to pay is $3300 this year and next year it will be $2000.
I believe you're correct, Putter. My healthcare consultant confirmed much the same last week. Thanks!
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