Started Orgovyx 5 weeks ago & am having adverse symptoms.

I don't know what may be driving your new 'adverse symptoms' since starting Orgovyx. However, I get angry when I just read the name of that drug. I was on it for a mere 4 months after being told by a variety of Drs. that the side effects (hot flashes, weakness, visceral fat, ED) would disappear a short while after stopping the drug. It's now been over two years since I stopped and I still have the same side effects. I get a lot of confused looks when I discuss it with Drs. and others, but, most simply say that they don't know why it's happening. I continue to seek answers with urology, endocrinology and MCC.

You have some good suggestions here and the point that I'd add is to continue to research and experiment what works for you. I often find the MCC PCa brotherhood more help than professional practitioners since they relate actual experiences rather than reciting what medical institutions tell them to say.

@seasuite
What Is your test testosterone level? Has it not returned to above 280?

It is unusual to happen when you’re on it so short of time, but it happens.

Are you on any other cancer medication’s right now? Testosterone blockers can cause this..

@jeffmarc May y current T level is about 280. I took T Gel for a while and it was over 400 but the sise effects did not go away and I didn't want to use a drug that reduces natural testosterone production. I'm talking to my doctor now about hCG and Enclomophine. At this point, I'm more likely to try the latter since I don't want to be injecting myself three times per week.

Yes, it's unusual. That was the point of my post that you can't always believe what the experts tell you. You have to figure out what works for the individual.

@ddavid
I was able to see a dietitian. I wanted advice as to how to best prepare for radiation treatment. I don't remember if I needed a referral from my RO. The Nutrition website says the dietitian service is free to all Fred Hutch patients. They post a phone number: 206.606.1148

@climateguy
Thank you very much. I will give this a shot.
DD

@seasuite I find Orgovyx to have far worse side effects than Eligard shots. Thanks for your input.

@heavyphil I definitely had side effects with the Abiraterone and Eligard combo. However, Orgovyx seemed to exacerbate things. I became far more emotionally labile and have more cardiovascular issues. I'm seeing my oncologist this week to address these concerns. I appreciate you questions.

@corin
This is quite unusual. I know dozens of people that have switched to Orgovyx And in almost every case, they have said they had fewer side effects. Results may vary, But I was on Leuprolide for six years, usually it was Lupron Some of the time it was Eligard and I definitely prefer Orgovyx.

@jeffmarc It is quite unusual. I was very excited about switching to Orgovyx. I have no clue why side effects have worsened given the literature suggesting it would be more tolerable. I hope my oncologist has some insight which I'll share after seeing her this week. It's disheartening because I thought Orgovyx would lead to a more rapid return of testosterone when I'm done with treatment in 14 months. The prostate cancer bummers continue...

@corin
The fact that you are on abiraterone Can explain some of the problems. It reduces your testosterone much lower than ADT. Because you are on it, it will take longer for your testosterone to come back, Pretty much eliminating the benefit of being on Orgovyx.

Abiraterone Gave me high blood pressure, Five afib Events and a lot more hot flashes.

The low testosterone is what causes the emotional issues. Doesn’t happen to everybody, but it does happen to a lot of people.

Doing a lot of exercise can offset some of the emotional issues from these drugs. Doesn’t work for everybody and some people do need to have mood stabilizers.