Began Orgovyx about a month ago...
PSA prior to taking it was 12.89
Got my labs at Emory yesterday and MO called me to report that PSA is now 0.39
after 28 days on it.
Once a day...just Orgovyx.
I wasn't embracing ADT as those I knew were getting Lupron shots combined with Zytiga and Prednisone...and had all kind of side effects
The only side effect I have had is some very transient hot flushes a couple of times a day.
FWIW
Good luck to you Starstation! I wish it was available here in OZ. The firmagon injections are painful for 2 to 3 days with some S Effects. I become invalid for the first week after.
I’m 2 months in and doing great starting proton at Emory next week
Ron Phillips
864-505-1277
Call me on Monday
Would you please be kind enough to tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/02/2022 12:39 PM DST
Originally diagnosed in July of 2015, Gleeson 7 (4/3); RP Oct. 2015...one undetectable PSA test post surgery....then PSA kept rising; May 2016-July 2016 39 shots of radiation to prostate bed....then undetectable until Sept, 2018...kept rising then was admitted to clinical trial at Univ of Calif San Francisco Med Ctr for PSMA/PET CT (Gallium 68) in Jan of 2020....inconclusive but suspect spot near left ureter....PSA kept rising thru the year then admitted to another Clinical Trial at Emory for comparing PSMA PET/CT Gallium 68 vs Axumin...November 2020: showed met to lymph node enlarged to the point of putting pressure on left ureter which was causing some back up to left kidney....so had surgery in Jan 2021 at Emory--had cut ureter and replant into bladder...removed a total of 16 pelvic lymph nodes....had ureter stent from bladder to kidney for a month and a half.PSA at time of surgery was 4.0...post op first PSA was April and it was O.33; three months later it was 0.89....three months after that it was 3.29 at which time my Emory Doc, Christopher Filson, said time to investigate. Went to UCLA for PSMA PET/CT in early Dec of 2021 which showed two more iliac lymph nodes 6cm met. Jan 2022 PSA was now 10.80....Feb 15 PSA taken at Emory was 12.89 at which time Dr Mehmet Bilen, MO, was guiding my hormone therapy and I chose Orgovyx.
Geezamacripe........You've been through the mill. Thank you for your bio, when copied and pasted to your home page it will be available for you and for others when needed. Please stay with us and keep posting..... it's like an arranged marriage, we need you and you need us...... Keep plugging away, the Beast is vulnerable...
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/02/2022 4:42 PM DST
Sounds like you are mCRPC now with strong PSMA site avidity. That makes you a good candidate for the newly approved (in USA) Lu177-PSMA-617 treatments. I would pursue it! I am still HSPC so am going to Australia for treatments in May.
Too early to declare me mCRPC... I just started Orgovyx...first attempt at ADT with good results after just one month. MO suggests intermittent ADT--four months on/eight months off. MO thinks we can go a few years doing this.
May I ask enquire the cost per month?
Initially co-pay was steep....$880/mo. But Doc can do paperwork and you can supply income info and it can be as low as $10/mo...I am working on that now. If I am successful I will update info.
I stopped my Lupron Depot inj’s last June 2021 bc of cardiac SE’s. Thought about Orgoxyx last Fall but $$ was not covered by my insurance because it was just released or new to Humana.
My copay was 9.80 per month
How did you get it that low?
My co-pay is also $10 per month! Just sayin...Please check the manufacturer web site as it has programs available to patients. Been on it for a year now. Some elevated glucose and minor hot flashes. The glucose wasn't happening while on Lupron, but is a known side effect of the pills. But I'll take the pills over injections, just my preference.
Glad to see it's working for you and hope it continues to do so!
Best Regards
the manufacturers will only assist with cost if you are on private insurance/commercial insurance. If on Medicare--those who usually need help--the mfg. won't assist with cost.
😢
How is your strength and stamina? This also drops the production of T so are both of those similar to while on Lupron?
my energy level is unchanged and have not had weight gain or any form of lethargy.
I've had some issues with stamina and energy/fatigue but is hard to tell because Docetaxel last year and kidney stone doubling up on that... created being not too physically active through the end of the year. So clearing those hurdles lately, I'm feeling ok, but stamina is still an issue. As spring time develops I will be more active and will have a better reply, lol.
Overall though, not much different than being on the Lupron.
Just had new PSA and Complete Metabolic Panel levels all in normal range after almost 6 months on Orgovyx. PSA , 0.02 undetectable, same as at 3 months. T was 786 before, now 15. I have transient hot flushes that usually resolve when I turn on a fan. Also bowels seem to move slower since I started. And of course, fatigue.
Medicare + Blue Cross Blue Shield Plan F and Plan D
$888 was copay for first Rx and second which just got filled...called my insurance company and they said actual cost is $2,500/mo....and my $888 is reflective of their insurance coverage...and sent me a link to manfacture's website about getting cost reduced further.
Been on Orgovyx for 1 year now with 5 months of vaca in between and it is far superior to Lupron. Side effects are minimal compared to Lupron, still not great, but my QOL is indeed better. I have BCBS insurance and it pays 100%, and looking at my ins statements, it costs around $2100/mo versus $2500 per 1 month shot of Lupron. IMO, all men on Lupron should switch if they are able.....
I have been taking Orgovyx for 8 months. I find it to be highly effective in reducing PSA and Testosterone, with both undetectable since the fourth month. However, it has not come without side effects. Those are: hot flushes, fatigue, some weight gain (5 lbs. over 8 months), and some muscle weakness. Importantly, all have been manageable, and I plan to continue Orgovxy for at least one year.
There is a co-pay of just $10 a month. I have Medicare (Plans A&B) and Blue Cross/Blue Shield. My PCa care team ran all traps for arranging insurance. Got very lucky there!
I've been on Orgovyx now for 6 months. The side affects are hot flashes mostly. Working on keeping my weight down with hard exercise. I've never had weight issues, and not used to watching what I eat. My PSA was around 12 as well, and it took it to .21 in just days where it has stayed. It works very fast compared to Lupron.
It was fully covered by my health provider. Then I went on Medicare in January. Orgovyx base price went wayyyy up as well. It was going to be $860 per month. I called the Orgovyx help line, and they got me copay assistance through Orgovyx, and I pay nothing. So glad of that!
Would you please be kind enough to tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/02/2022 12:38 PM DST
Started Orovyx about 5 months ago. My oncologist requested the manufactures free 2 month trial so I could work on getting my insurance approval. I’m a vet so VA is now paying for it at no cost. The drug has been very fast acting & effective. I prefer it to Lupron injections & like the fact it allows the testosterone to return more quickly & makes my vacations from treatment (Xtandi) more efficient.
Medicare with a blue cross ppo supplement through CALPERS in CA. My supplement includes drug coverage, I do not have part D.
Been on oral Antagonist ADT for 18 months. No issues....just intermittent hot flashes (much better than with injection) and given pain, hassle and side effects with injection....so much easier.
Similar experience. Six weeks into Orgovyx with NO side effects other than mild hot flush at night. PSA went from 0.42 to undetectable. Plan is to add Nubeqa and radiation in January.
Relugolix/Orgovyx or Enzalutamide/Xtandi? 
Orgovyx dosage when on Erleada
Starting relugolix / Orgovyx 
Potential Orgovyx Side Effect
ADT with Orgovyx
