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Support for wives with the Orgovyx tornado: Needing an olive branch
Prostate Cancer | Last Active: 19 hours ago | Replies (47)Comment receiving replies
@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!
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@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.