Started Orgovyx 5 weeks ago & am having adverse symptoms.

After having been on abiraterone, Orgovyx Would not have any additional effect on your testosterone. That’s what normally causes a problem. It actually does nothing more than Eligard because you are on abiraterone which drives testosterone lower than Eligard or Orgovyx.

Normally people have no additional side effects from Orgovyx. I’ve been on both Lupron and Eligard And switched to Orgovyx After six years on the other two, and The only difference was for five months my hot flashes stopped. Then they came back.

It is possible you are reacting to Orgovyx. You could go back to a one month Eligard Shot and see if that stopped the problem

We often hear about the physical benefits of exercise to minimize the physical side-effects of hormone therapy. But, there are also mental health benefits as well —> Exercise turns on many types of switches in the parts of the brain that puts us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more.

Incorporating a robust resistance-training exercise program is a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.

Also, many cancer treatment centers have counselors to help patients and family members in dealing with the emotional and mental aspects of the treatments. Perhaps you could reach out to them for recommendations.

@jeffmarc Thanks, Jeff. I appreciate your insight.

@brianjarvis Thanks, Brian. I appreciate you reaching out with this reminder. It's so easy for me to lack motivation to exercise and what I really need to do is prioritize a daily routine. I'm not sure I'm open to counseling, but the exercise piece is critical and I'm grateful you took the time to outline the benefits of exercise.

@corin

I was on eligard for 18 months. It's hugely important like everyone is saying, to stay active. My last 6 month shot was October of last year and I'm still sweating like a mad man haha But I run 3 miles one day, then I walk 3 miles. I take Sundays off, cuz, well, that's the day off! haha The exercise is key to staying positive, at least for me. Keep it going my man!!!

@dpayton Thanks so much for your encouragement! I could not agree more with exercise being the key. The problem is having the energy to get up and get it done. I used to be incredibly active (Brazilian Jiu Jitsu, tennis, weight lifting) but somehow I've fallen into this vortex despite knowing how important exercise is. I really appreciate hearing about your regimen and receiving your positive motivation.

@corin So you were on Eligard AND Abiraterone for 10 mos with no SE’s?
And now you are only on Orgovyx and having symptoms?
If that’s the case, it could be the cumulative effects of all the ADT over time? Orgovyx certainly can cause problems, but I would think that the 2 drug regimen would be worse.
Phil

Castrate is exactly that, typically the goal is <20 though not long agonies<50.

The common side effects of castration are generally understood.

The question then may be, which agents, for how long...

Various factors come into play;

One's medical team recommendations.

Insurance.

Convenience, is it easier to take a pill(s) daily or see my medical team every , 30, 90 or 180 days for the shot?

Then there are the side effect profiles. Some ARI necessitate use of prednisone, others may not pass the brain blood barrier.

Some are "better" for folks with cardiovascular issues.

Some may have conflicts with other medications one is taking.

Some may not cause a flare, Orgovyx, faster to castration, higher sustained castration while on treatment, faster T recovery when stopping (generally!)

So, when choosing which ADT, which ARI, there are a lot of variables.

As to the side effects, which ones and the severity each of us will experience, that varies in a heterogenous population and heterogenous disease. I have never lost my libido not ability to achieve erections and orgasms when on systemic therapy. Granted, sex is different. I'm not bragging, just saying...I do experience hot flashes, gained almost 20 pounds despite minding my diet and exercise, yep, fatigue and muscle and joint stiffness. I never experienced depression and generally my labs didn't show anything going south.

So, using statistics and the Bell Curve, I may be one or two standard deviations to the right.

There are mitigating strategies that you control:
Diet
Exercise
Managing stress.
Attitude - never ignore the power of the mind!

One's medical team may be able to help with others such as depression, hot flashes...

My experience has been that the only difference between being on and off systemic therapy is not what I do, just how I feel doing it.

You could go back to your prior regimen and see if the change you are experiencing "goes away."

That answer depends on your response to the variables I mentioned earlier.

Me, no worries with insurance or financial toxicity. I hated that damn Lupron shot. I have a history of Afib, DVT, PE and TIAs so it's a no-brainer.,
Orgovyx it is!

I exercise most days, if the gym, an hour on the indoor bike, resistance training, sometimes I add swimming. Other days I ride my bike, yesterday 46 miles. I play pickleball with a group of old dads, usually for two hours. I ski, hike when on vacations...

Heck, I did the Bataan match in White Sands with my sister while on 18 months of Lupron. Again, not bragging, just pointing to the mitigating strategies I control.

Kevin

A researcher who is pioneering the study of the effect of exercise on cancer is Kerry Courneya at the U of Alberta. Here is a video of an extensive interview with him:

"a cancer diagnosis and treatment has a very negative impact on exercise levels. All of these patients [ in his studies ] report doing dramatically less exercise during treatment than they were doing before diagnosis. After treatments, in survivorship, exercise will tend to increase back but not back to pre-diagnosis levels. It's like the diagnosis and treatment of cancers is kind of having a permanent negative impact on exercise levels”

He advocates that care teams emphasize how important exercise is to patients, and that more formal support be offered. He points to some positive signs:

"We're seeing a big growth in community- based exercise programs for cancer survivors. We have LiveStrong at the YMCA which is a program being rolled out across the US where you can go and work with an exercise specialist specifically working with cancer survivors."

He also pointed to a change evident in what some of the top flight NCI designated cancer centers in the US are doing:

"Many of any of these NCI designated Cancer Centers have fantastic exercise programs. MD Anderson Cancer Center in Houston. Memorial Sloan Kettering in New York. Dana Farber in Boston. A lot of the top Cancer Treatment Centers now have exercise specialists working right at the Cancer Treatment Center offering these programs to patients who are newly diagnosed. So there's a bunch of things that are going on to try and and help patients..."

I was treated at Fred Hutch, an NCI designated cancer center in Seattle. They don't have exercise specialists working to help their patients. When they sent me a survey to fill out after some of my treatments, I was totally positive about everything they were actually doing. It is a great place to be treated.

The survey had a section where you could write about anything they didn't specifically ask about. I quoted Courneya's statement about what their peers (and rivals) were doing.

I said those institutions are starting to respond to the evidence that is piling up about exercise - why not you? I encourage anyone reading this to let their treatment center know how they feel about this issue.

@climateguy
I am getting treatment at Fred Hutch as well. I have asked for one-on-one consultation on nutrition and excercise and so far have not received much other than them sending me links to information sources. I like the idea of speaking up and letting them know there are other cancer centers out there providing more services for their cancer patients.