Starting Orgovyx - any advice based on experience?

So, ADT and an ARI.

It would help the forum if you can provide your clinical history - date and diagnosis, any prior treatments.

My response in more general without that clinical data.

First, I would get baselines tests and labs: some to consider:

PSA
Testosterone
CBC
Metabolic Panel
Lipid (fasting)
Bone Density

I would agree on and set a schedule for consults and what labs, PSA, T, CBC and Metabolic Panel, likely every three months.

I would consider seeing a cardiologist to get a baseline cardiovascular assessment.

Since your medications require YOU to take them every day vice seeing your doctor for an injection, figure out a system that work for you to do exactly that. I have my Iphone give me a reminder each day.

Finally, understand the array of side effects and mitigating strategies:

Your responsibility: diet, exercise, managing stress, necessary sleep and rest.

Your medical team - if necessary, medications to counter side effects such as hot flashes, bone density loss, decreases in any blood counts such as WBC, RBC, what to do if labs show kidney and liver functions impacted (hydration is good!), CV issues..

Speak up with your medical team, there is no scrap of information too small for them to piece together any treatment adjustments or countering with medical interventions as and if needed.

The hot flashes, fatigue, and muscle and joint stiffness were the side effects I experienced, generally "mild" but I exercised daily, took naps when I felt like it, kept ice water handy, ran the fan at night in my bedroom, never used the heater in my car, would not wear sweaters or sweaters that required me to pull them off over my head at he first sign of a hot flash, any outer clothing had to be a fully zippered or a few buttons such as a suit coat. I would disappear to the back deck often (well, not during the summer!).

Kevin

Been on Orgovyx for 5 weeks. Mild afternoon fatigue and some
Minor blood sugar issues
No other side effects
Very important you exercise, cardio and weight training
Orgovyx has had no effect on my lifestyle. Body weight has decreased 3-4 pounds

Hi Kevin. Thanks for the thoughtful response. That’s a lot of great information there. Looking at your history you’ve had quite a ride haven’t you?

I’m 3 months away from turning 69 YO. No co-morbidities. 30 BMI. I exercise 5-6 days a week. I don’t smoke, drink, or use recreational drugs. Avid cyclist.

I was first diagnosed in 2020 with Gleason grade 6. I opted for focal brachytherapy and all indications were that I was disease-free until March 2023 when my PSA started to rise. My urologist was also my radiologist so when he went on medical leave (and never came back) I couldn’t find anyone in the Chicago area familiar with brachytherapy I had to travel to St. Louis for consultation. A PET-PSMA scan and 3T MRI showed two lesions. One at the site of the failed brachytherapy and a second in the untreated area of the prostate. Also 2 pelvic lymph nodes. Treatment in st. Louis would’ve required my wife and I to move down there for at least two months so I sought treatment in Chicago.

I went to Northwestern Medicine in Chicago. They felt that I was a good candidate for salvage RP which as you likely know is seldom performed after radiation. I had surgery in January. They removed the prostate and every local lymph node they could reach. 3 mos post surgery I’m doing well. Pathology showed one lesion Gleason 9 (4 +5) and the second lesion Gleason 8. Post surgery PSA Nadir at 0.43. The surgeon was unable to safely remove one of the suspicious lymph nodes so the plan is to go after it with ADT and radiation to the pelvic lymph node basin. The current plan is 33 sessions over seven weeks. They’ve got baseline numbers on everything and will do regular bloodwork.

I’ve met with a personal trainer and have developed an upper body exercise routine, using my bowflex and a lower body workout routine using ankle weights and or the bowflex. I have both a recumbent trike and a cyclocross two wheeler and hope/plan to include cycling in my effort to maintain strength and muscle mass.

Well, you are on top of your treatment and mitigating the side effects...

With that GS you are in Grade Group 5 so the 24 months of ADT combined with an ARI makes sense as does the radiation to the PLNs.

My only other thought is whole pelvic lymph node treatment with the radiation vice the pelvic lymph node basin. Not that I'm smart enough to appreciate the difference from a radiologist's expertise...

When the C11 Choline scan showed the four PLNs, we agreed to treat those with boosts and wider margins, then for good measure, radiated the entire PLN system.

It's been 10+ years, some see it as hard to understand when I say "I've been fortunate," but I have only been on active treatment three of those ten and it has never gotten into the organs, bones nor have I become castrate resistant.

Beside "good fortune," I've stayed on top of my PCa, actively monitoring while off treatment, having decision criteria when to go back on, have been insistent that without solid data to support continuous lifetime treatment, we treat for defined periods with decision criteria as to when to stop. My medical team are active listeners and support shared decision making. When I went back on treatment last April, my radiologist (the same one for all my radiation treatments) asked what I wanted to do. My o, new, wanted to do 24 months of Orgovy and add Xtandi as potentially curative. I looked at him, looked at my chart, talked about the Embark trial and said, we are not going to cure this, we are going to manage it as a chronic disease. He thought for a minute and said, ok, let's do 12 months ADT, hold the Xtandi if you're PSA doesn't drop to undetectable within the first three months, if not, we add it. Then at the 12 month mark, let's see where we're at and decide to stop and actively monitor or continue.

On the 4th of April, the one year point, we met, I layed out the argument for stopping, I could see he wanted to do six months more but he didn't have the data to argue for it in terms of increased progression free survival, overall survival...I said the risk is I become castrate resistant. He agreed, knowing that he would see me every three months for labs and consult, image when necessary and would go back on treatment willingly.

Kevin

Kevin, we think much alike. I’m a retired engineer so much of my life‘s work has been guided by data. My oncologist who I think is absolutely terrific is very pragmatic and a good listener. Both he and my surgeon made a very compelling case for the use of both 1st gen and 2nd gen ADT from the get-go plus radiation for the best possible chance of a cure at this stage since the known disease is limited to one lymph node and the prostate bed shows no evidence of disease. Having read the embark trial, I lobbied for a short course of ADT. I was advised against that so I lobbied for Orgovyx over Lupron for hopefully better quality of life during and post treatment. In the event that I can’t achieve permanent remission, I am at least hopeful that the disease can be managed and I have 10+ years ahead of me.

Thank you again for your thoughtful words and I wish you my very best on your journey.

I'm starting Orgovyx at the end of this month to replace Firmagon (after 2½ years). I'm looking forward to life without the acute monthly post-injection symptoms from Firmagon — swelling at the injection site, muscle pain, and 2–3 days of flu-like symptoms — but the chronic side-effects should be what I'm already used to, since it's the same chemical compound.

@robertmizek and everyone on this thread, you may also be interested in the helpful comments and shared experiences in this related discussion:
- What's your experience with Orgovyx (relugolix)?
https://connect.mayoclinic.org/discussion/the-orgovyx-thread/

Using the keyword "Orgovyx" in the group's search field offers a weath of related discussions relevant to starting, ending and during treatment with Orgovyx as well:
https://connect.mayoclinic.org/group/prostate-cancer/?search=Orgovyx&index=discussions

Interesting thread — I'm surprised by the severity of some of the reactions reported.

In my case (with Firmagon, which is chemically similar) it's hard to sort out whether any specific side-effect comes from ADT, my androgen-reception inhibitor, my blood thinner (for DVT acquired while bed-ridden in hospital), the nerve damage caused by the metastasised tumour compressing my spine, or the emergency surgery and cement and rods in said spine.

But while I've experienced the expected testosterone-deprivation symptoms (mild gynomastia, need for an afternoon nap, thinning of body hair, reduced libido, and some initial weight gain — now under control) in the 2½ years since I started on ADT, every month I've felt stronger, not weaker, and I've never had the severe heart-pounding, brain-fogging side effects others warn about.

Am I just lucky?

Radiation 7 weeks?
SBRT was not an option
I had 3 pelvic lymph nodes and one prostate bed indication. Psa was 3.6
9 years
Post RP. Prostate bed and one lymph node were resolved and two keep shrinking. PSA now .8
Recent Psma
Showed one new pelvic lymph perio-meter size
Started on Orgovyx 6 weeks ago, mild
Fatigue
Will be getting 5 SBRT treatments in may

Best wishes for success with your next steps!