Orgovyx and Zytiga combined

Similarly; I have both lower back and hip arthritis. I just finished physical therapy and was without pain. Since the ADT and radiation the pain is back with a vengeance. The radiation oncologist says it’s the ADT medications, but I’m not sure. Seems to me that radiation would irritate the joints. I’m planning on getting corticosteroid shots for the pain points but this is only the beginning of my PC treatment.

I’m told by the RO that there are no medical studies that provide data as to the differentiating effects of 6 months vs 2 years on these meds. Therefore I was hoping to illicit feedback on what people have done in these circumstances given the same Gleason scores of high risk with no know metastasis

I'm not sure if your onco is saying there are no studies on Orgovyx+abiraterone, or Lupron+abiraterone, but it should not matter. All of these patients being put on ADT + abiraterone/Zytiga with high risk localized or locally advanced disease are doing so based on the STAMPEDE trial that has been ongoing in the UK and Switzerland. One of the many trials included under STAMPEDE was for patients with high risk, non-metastatic disease. It did include patients with locally advanced disease , i.e., pelvic nodes. The latest reporting I saw was at 108 months from start of treatment PCa-specific survival was 85-ish% for the arm in which patients took abiraterone in addition to ADT and high 60's% in the arm with ADT only. That is a huge benefit and is what caused the standards bodies to designate this combination therapy for high risk, non-metastatic patients as Standard of Care. There was no distinction made by the type of ADT used in both arms, so Lupron versus Orgovyx should be a non-issue.

So I would press your doctor to show you proof there is no evidence of that combination being used. It has been Standard of Care for some time now. Mention the STAMPEDE trial.

My oncologist agreed to put me on ORGOVYX along with Abiraterone. He’s a brilliant doc and I like him and respect him. His biggest concern was the out of pocket cost for Orgovyx since I need to be on ADT for 2 years. I qualified for financial assistance so cost is not an issue but based on how well I feel, I would’ve figured out how to pay for it if I had to.

I’m doing great; arguably better (less side effects) than my cohorts that are taking Lupron and Abiraterone. My PSA drop like a rock in only three weeks and became undetectable and still is undetectable. My oncologist is delighted.

All the best to you for success on your journey!

Cost is a big concern with Orgovyx for most people. I was very fortunate in that the specialty pharmacy at the cancer center I go to basically gives Orgovyx and abiraterone to me (and I assume all other patients taking it) for free. They pick up the copay cost once I've met my annual deductible on Part D. Extremely generous of them and greatly appreciated.

My PSA was undetectable the first time it was measured after starting Orgovyx and has remained that way. I started abiraterone about 10 months later and the small amount of testosterone that was being detected in my labs before then vanished after I started abiraterone.

Best of luck to you!

Hi Tom, I'm 70 and have been on Orgovyx + Abiraterone for about three months. I had to fight to get Orgovyx because my oncologist wasn't aware of the STAMPEDE trial. Once he read it, he prescribed it for me with the warning that it was a new drug, it was expensive, and we still don't know what happens after being on it for n+ years.

The combination works great, and I recommend it highly. However, the side effects for me have been difficult to deal with. These include periods of hot flashes that come and go every few hours, even while I'm asleep. And I'm constantly fatigued. Ironically, the best solution for my fatigue is exercise. I row at least 30 minutes a day, four days a week. I use a TRX system for strength-training four days a week. And I take an online Pilates class three days a week. All of the above is done at home.

Best of luck as your treatments continue.

Jeff

Just to clarify, the arm of the STAMPEDE trial I was referring to was testing the effect of adding abiraterone to basic ADT with or without radiotherapy. The report I saw did not distinguish what type(s) of basic ADT were used, though given the timeframe during which patients were randomized, Orgovyx was not yet commercially available. What's more, I don't think it would make any difference in the outcomes because Lupron et al and Orgovyx/Firmagon do essentially the same thing, shut down the testes. The latter just do it more quickly and don't have a T spike.

He's correct it's. anew drug and long term side effects may not be well understood, but it's method of action is like Firmagon/Degarelix which has been in use since 2008.

So, that arm of the STAMPEDE would not have been testing the efficacy of Orgovyx. That was done in the original clinical trial for Orgovyx - HERO.

Thanks for that clarification.