Hello all - I was hoping someone has some insight for me. I just started ADT which consisted of a loading dose made up of 2 shots of Firmagon in the stomach. While the shots did not hurt much, it was about 8 hours later that experienced a lot of pain at the injection sites. Today, which is 9 days after the shots, the pain has finally subsided to an almost unnoticeable point. My MO wants to start me on a 3-month Lupron injection for my next shot, then shortly thereafter add Abiraterone or Enzalutimde. I asked him about Orgovyx, as I do have some Coronary Calcium, and also have mild Hypertension. As a side note, next week I am starting 37 Rounds of Protons to the Prostate Bed and Lymph nodes, as we have found 1 node with mild uptake after 2 PSMA pet scans.
In researching ADT, I thought Orgovyx is/was better for the heart and equally as effective in lowering T. However, my doctor stated that Orgovyx with a Enzo or Abi doesn’t work as well as Lupron with Enza or Abi. Appreciate your thoughts on whether any of you have an opinion on Orgovyx vs. Lupron with a Abi or Enza
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I'm a fit 65 years old. I'm in my 4th month of Orgovyx. Besides my PSA dropping from .42 to undetectable within the first 4 weeks, I had zero side effects. Only now, 4 months in and adding IMRT everyday, I have fatigue. I lead a very physical life building custom camper vans (humbleroad.tv) (shameless plug...) My PSA remains undetectable. My MO at Memorial Sloan Kettering wanted me to start Nubeqa concurrently with the Orgovyx. In an interview with one of Dr Kwon's assistants at Mayo Clinic, she expressed great concern with me taking Nubeqa, given the low level of my disease and advised against it. Could cause more problems. The point of this story is this; I have conferred and will continue to confer with MSKCC, Mayo Clinic and Robert Wood Johnson. And then, with a dash of info from this site, formulate my own course of action. My present COA is; as few drugs as needed and heavy emphasis on QOL. Given the current SOC, I'm not pursuing "the cure." But rather, hang on until the big breakthrough occurs. IMHO, that will be immunotherapy. Once your own body recognizes cancer as a threat, it's game over. Period.
how do you get appointments with these other drs. Would love to get some other opinions for my husband … he’s stage 4b. Lympth nodes Gleason 9 cribform identified 79 but very very active in building trades … we flip houses together. He’s on Orgovyx too now wasn’t him to start Zytiga and prednisone? So confused n=by all,of this …loves his MO but he treats all kinds of cancers. My husband is his first patient on the Orgovyx, which seems crazy. I don’t think he has his much experience as we like.
Thx for post-my MSK med inc Rafelson prefers Lupron over Orgo for me due to long track record and I have a lot of post RP spots so likely long term HT. I would He says ther is virtually no immunotherapy progress so I will be on lookout- scheduled to start Lupron next week but hope I can make a case for an Orgo switch after 3 mo, and immunotherapy at some point.
My 74 four year old husband has intermediate risk prostate cancer that hasn't spread. They wanted him to take 2 Lupron shots 3 months apart (for 6 months of treatment) with radiation. He was not comfortable about six month on a testosterone blocker for all the obvious reasons. After we sent many questions and concern, miraculously the doctor says there is an option of 4 months of Orgovyx which has lower side effects, less dangerous to the heart, is taken by mouth daily and the testosterone returns faster. It was approved by the FDA in 2021. No painful injections or doctor's visits. He also offered the option of 4 monthly shots of Lupron. All of a sudden 4 months works just as well as 6.
I asked why it wasn't the new "standard of care" and got no answer. I learned if the hospital gives you are shot , it's an "infusion charge" and they make much more money for the visit and shot. If you take a pill at home, they don't make that money.
Orgovyx has to come from a specialty pharmacy and gets mailed to you. You do get charged for your deductible and copays. In his case, It will be expensive for only four months. Since Lupron is given at the hospital it will be charged differently. Ask your insurance the cost to you and make a decision based on what you can afford. By the way he ONLY has mild hot flashes and is able to run his very active business. Almost no side effects and no painful shots or time wasted seeing the doctor.
Lupron comes 1 and 3 months dosages (maybe others).Shots every four months would be very lucrative for the hospital and also Lupron is said to have more side effects. Did he really think we would go for that option? He was willing to subject my husband to 6 months of no testosterone, instead of only 4 because he was going to use 3 month shots. Yikes. VERY disappointing tactics from a major Boston hospital!
Hi thanks for sharing, yes I also experience some ambiguities in treatment - I only went Lupron 4 weeks ago (3month) because my MO prefers a significant track record and follows SOC and Hopkins preferences even though Orgo seems much better out of the box. Still trying to build a case to get an Orgo prescription and a willing doctor. Was told 1 month Lupron is in shortage!
My 74 four year old husband has intermediate risk prostate cancer that hasn't spread. They wanted him to take 2 Lupron shots 3 months apart (for 6 months of treatment) with radiation. He was not comfortable about six month on a testosterone blocker for all the obvious reasons. After we sent many questions and concern, miraculously the doctor says there is an option of 4 months of Orgovyx which has lower side effects, less dangerous to the heart, is taken by mouth daily and the testosterone returns faster. It was approved by the FDA in 2021. No painful injections or doctor's visits. He also offered the option of 4 monthly shots of Lupron. All of a sudden 4 months works just as well as 6.
I asked why it wasn't the new "standard of care" and got no answer. I learned if the hospital gives you are shot , it's an "infusion charge" and they make much more money for the visit and shot. If you take a pill at home, they don't make that money.
Orgovyx has to come from a specialty pharmacy and gets mailed to you. You do get charged for your deductible and copays. In his case, It will be expensive for only four months. Since Lupron is given at the hospital it will be charged differently. Ask your insurance the cost to you and make a decision based on what you can afford. By the way he ONLY has mild hot flashes and is able to run his very active business. Almost no side effects and no painful shots or time wasted seeing the doctor.
Lupron comes 1 and 3 months dosages (maybe others).Shots every four months would be very lucrative for the hospital and also Lupron is said to have more side effects. Did he really think we would go for that option? He was willing to subject my husband to 6 months of no testosterone, instead of only 4 because he was going to use 3 month shots. Yikes. VERY disappointing tactics from a major Boston hospital!
I have been on Orgovyx for a year now. Mainly not wanting to endure the shots plus Orgovyx has less heart impacts. Abiraterone does not negatively interact with Orgovyx but Enzalutamide & apalutamide do according to my MO. It drops your T super fast which is a plus and once you are off it supposedly your T comes back faster.
I am as happy as one can be with the Orgovyx decision. I have nothing to compare it to however. Good luck with your decision and treatment.
I would be curious to see his source claiming that Orgovyx doesn’t work as well with Enzo or Abi, as my husband has been on both combinations and his testosterone has always been <7, so clearly the Orgovyx is working just fine. Perhaps he is confused because of the requirement for Orgovyx and enzalutamide to be taken at least 6 hours apart. This is easily accomplished by taking Orgovyx in the morning and enzalutamide at bedtime.
I would go for the Orgovyx /abi combination if I were you for the reasons mentioned, with an eye on your BP liver etc. How much do you exercise? Controlling your heart calcification depends a lot more on that than the antagonist/agonist choice, and abiraterone/prednisone may exacerbate the hypertension. .
I was on Eligard and Xtandi when I began my ADT treatments about 15 months ago. The combination provided significant additional cardio-vascular issues for me and I was switched to Orgovyx because it is easier on the heart. Since the switch, my PSA has remained undetectable and I have had no further cardiac "episodes". The other side effects (fatigue, hot flashes, muscle loss, weight gain, brain fog) have remained through the change.
I had hot flashes and mood swings on Lupron that ended when I switched to Orgovyx. A once daily oral. My experience is, that Orgovyx does everything Lupron does, only better and with fewer side effects.
Myovant has a very generous manufacturer's discount program. That coupled with employer insurance coupled with a "Save on SP" program from my employer, I pay nothing for the medication. orgovyx.com/ All the best, and let me know if I can answer any further questions.
I was also on Erleada while I was still ADT sensitive, but they took me off Erleada when I became ADT resistant. It is thought to be more beneficial to be on both a 1st tier (Orgovyx) and 2nd tier (Erleada) ADT drug at the same time. I have now exhausted all of the standard of care options and not on any treatment program.
My husband has heart disease, triple by pass surgery, partial lung removal and more recent two stents . High blood pressure, diabetes, and Parkinson's. He was fine on enzalutamide for several years. There are many things that make a difference in treatment choices your doctor makes. Everyone's cancer is unique for them. Your doctor has a reason for what he feels is best for you. That's why he is a specialist and not just taking advice from strangers . He reads medical reports and confers with other specialist. I know it is scary and a lot to take in...but trust your doctor. Ask questions, of course. He should be happy to explain why he is prescribing a certain treatment for you. You can always get a second medical opinion to ease your mind. We can truly understand your worries, sympathize and share experience in our journey, we should never try to influence you on what treatment to use. Everyone is different in what works. I worry when people do that. Good luck.
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