Support for wives with the Orgovyx tornado: Needing an olive branch

My husband has been on Orgovyx and Aberiterone + prednisone for a little over a year. Had proton Therapy in Nov/Dec 2025. Proton therapy great. He has been angry about the Orgovyx since the beginning effects, which were not clearly explained to him by the oncology urologist - who we have since replaced. I totally understand and agree with what you are experiencing and am going through the same experience. Oncologist wants him to continue with both prescriptions for another 2 years. Husband is saying 1 year. We'll see. He insists he is not depressed and will not take anything prescription to help. Says he is taking too many prescriptions as it is - has some other issues. We do take several excellent supplements to support our health, and one that stands out as helping him a lot with mood and temperament is Bliss. He'll take that every day without issue or 'conversation'. I can help with that. Good luck to you both. It's hard. Sometimes just have to go silent and walk away, as nothing I can say or do makes a difference. There's as song, "You only hurt the one you love" that runs through my mind on occasion. My husband apologizes, but that doesn't make it any easier in the moment either.
I am appreciating the comments and help that the men have been offering on this for you.

@bms39
Please be careful with the supplements, Check with your doctor to make sure they are not going to counter the effects of the drugs he is on. One of the other wives talked about how her husband supplements were causing him to have liver problems and had to stop the supplements right away because they conflicted with the prostate cancer drugs.

You are new here so I’m gonna give you the full list of issues with Orgovyx (ADT)

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression. In some cases that are just mood changes that are not good, Not depression, Exercise can help offset this, Seems counterproductive, but it’s true.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none..

@ep1cre - Wife here! I understand what you are going through. March 2022- RP, pathology afterwords Gleason 9 / highly aggressive. Dec 2022- Neuroendocrine tumor/ partial gastrectomy surgery. Husband was doing well- back to cycling 50 miles a day. Recurrence - Radiation and Lupron. ( Prior to PC, hubby had low T which was treated with injections). Lupron has been a nightmare for him. He is in the % where diarrhea is a side effect. Every day of his life for two years. No quality of life. Unable to sleep. Anger, muscle wasting. Only thing that kept his head in the game was acupuncture. Godsend. Plethora of doctors-no answers. Should have bought stock in Imodium. Last injection Dec 2025, labs undetectable, whew. Just when you think, things moving forward… knee replacement surgery needed. CT scan for Neuroendocrine follow up - shows kidney stone. Dealt with. Two weeks out from knee surgery, constipation. Irony not lost. All good now. I’ll take all of this so that I get to love him longer. Not for the faint of heart. His PCP said I was a fierce advocate for him / got things done. Praying for better days!

@suzystation
I must admit I am pretty puzzled about your description. You say your husband had a neuroendocrine tumor. I know a couple of people that have had them, and they all died within a year or a year and a half. Neuroendocrine really is fatal if it’s prostate cancer. Are you absolutely sure that was neuroendocrine and was not just a metastasis?

You seem to be saying that they operated on the area with a tumor and removed it? That would be a great way to get rid of one. Never heard of them being able to do that before.

The best way to find neuroendocrine tumors is supposed to be an FDG PET scan. Has he ever had one?

Sure good to hear he is doing well. I’ve had two knees replaced while on ADT. The first one was easy. The second one was after I’d been on it for five years and my muscles were just not up to recovering quickly.. It took a year and three months, but after that time I have been able to run on a track, a mile, twice a day, and I’m 78 years old with PC for 16 years. He should be back to cycling within a few months.

@jeffmarc - sorry I wasn’t clear. He has two different types or unrelated cancers. Has had FDG Pet scans. His Neuroendocrine was in the duodenum/pylorus, treatment was surgical removal. Now on 6 month f/u for 5 years. Neuroendocrine oncologist when reviewing his mri for PC could see the tumor but said unless you’re are looking for it , easily missed. Thank you for sharing your insights and story. I have seen your responses to many who are just starting this journey and those whose journey continues. Giving hope to those facing PC and that there can be life with it. Your sharing about your journey and new research/ studies is what this support group is all about. Thank you!

I've been on Orgovyx and zytiga for 22 months. Been taking zoloft to help with moods but not really helping. Anyone have experience with Wellbutrin?