Orgovyx and Erleada

I posted in 2018; time for an update; 13+ years and moving forward! I’ve noted there’s not much discussion in the forum about two medications, Orgovyx and Erleada. I thought I’d contribute my experiences to date. Basic information:

I was diagnosed with prostate cancer in 2008 at age 51 with a PSA of 6.2. After biopsy, my diagnosis was T1cNoMo, Gleason 7 (4+3). RRP quickly followed. Pathology kept Gleason at 7 (4+3) but stated that some areas were 10. There was also a change to T2cNoMo. Seminal vesicles and lymph nodes were negative. PSA went to 0.

PSA of .1 appeared in 2010 and rose to .3 in 2011. My urologist recommended radiation, which was accomplished in the fall of 2011. Preparatory to the radiation, pelvic MRI and a bone scan revealed nothing. PSA immediately went to 0 and stayed there for 3 years.

PSA rose from .9 to 2.9 during 2017-2018 at an accelerating pace. I had an Axumin PET scan which found two metastases in my lower right abdomen lymph cells. Cyberknife radiation followed and my PSA returned to 0.

PSA registered again in December 2019 and slowly climbed, reaching 1.2 in July 2021. Another Axumin scan was accomplished that month. One metastasis was definite and a second an indistinct possibility. Unfortunately, both were at the sites previously radiated and cannot be re-radiated.

The urologist recommended we start Androgen Deprivation Therapy (ADT) and brainstormed a different method. Instead of Lupron, we’d use Orgovyx, FDA approved in December 2020. I started Orgovyx in August. Primary side effect for me is hot flashes of moderate severity, several per day and during the night. I get hot, a sweaty forehead, and they last roughly 5 minutes.

Labwork for my November quarterly appointment revealed undetectable PSA and testosterone. Orgovyx was doing its job! Recommendation was to add Erleada, which must be taken at least six hours apart from Orgovyx. My journey with Erleada began just before Thanksgiving and it’s more challenging than Orgovyx.

I take Zolpidem ER for sleeping support. I immediately experienced sleeping changes from Erleada (taken in the evening): an early sleep time bout of nervousness, more hot flashes and vivid dreams.

Now, I’m making sure I not only have a gap of 8 hours between Orgovyx and Erleada and then also 6-7 hours between Erleada and Zolpidem ER. No change yet in my new nighttime adventures.

My primary physician had me get glucose labwork at the end of November, since I’m a borderline diabetic. Compared to July, A1c shot up from 5.9 to 6.7 and glucose from 136 to 150. Ouch! The increase is unusual for me; I believe Orgovyx is responsible. I’ll see the primary in early January to discuss.

The Erleada caused insomnia is challenging enough that I’ve contacted the urologist office. They are researching to determine if I should be switched to a similar medication. I’m guessing Xtandi.

Comments and questions are welcome!