Starting Orgovyx - any advice based on experience?

Posted by robertmizek @robertmizek, Apr 21 9:33pm

I will be starting Orgovyx Monday, April 22. 1000mg Abiraterone and 5mg Prednisone will be added about a week later. The plan is 24 months with 7 weeks of pelvic node radiation starting in June.

Any advice and/or well wishes are appreciated.

Best to everyone on this forum for the best possible outcome for their personal journey.

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@robertmizek

Hi Kevin. Thanks for the thoughtful response. That’s a lot of great information there. Looking at your history you’ve had quite a ride haven’t you?

I’m 3 months away from turning 69 YO. No co-morbidities. 30 BMI. I exercise 5-6 days a week. I don’t smoke, drink, or use recreational drugs. Avid cyclist.

I was first diagnosed in 2020 with Gleason grade 6. I opted for focal brachytherapy and all indications were that I was disease-free until March 2023 when my PSA started to rise. My urologist was also my radiologist so when he went on medical leave (and never came back) I couldn’t find anyone in the Chicago area familiar with brachytherapy I had to travel to St. Louis for consultation. A PET-PSMA scan and 3T MRI showed two lesions. One at the site of the failed brachytherapy and a second in the untreated area of the prostate. Also 2 pelvic lymph nodes. Treatment in st. Louis would’ve required my wife and I to move down there for at least two months so I sought treatment in Chicago.

I went to Northwestern Medicine in Chicago. They felt that I was a good candidate for salvage RP which as you likely know is seldom performed after radiation. I had surgery in January. They removed the prostate and every local lymph node they could reach. 3 mos post surgery I’m doing well. Pathology showed one lesion Gleason 9 (4 +5) and the second lesion Gleason 8. Post surgery PSA Nadir at 0.43. The surgeon was unable to safely remove one of the suspicious lymph nodes so the plan is to go after it with ADT and radiation to the pelvic lymph node basin. The current plan is 33 sessions over seven weeks. They’ve got baseline numbers on everything and will do regular bloodwork.

I’ve met with a personal trainer and have developed an upper body exercise routine, using my bowflex and a lower body workout routine using ankle weights and or the bowflex. I have both a recumbent trike and a cyclocross two wheeler and hope/plan to include cycling in my effort to maintain strength and muscle mass.

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Do you remember what Dr you saw in STL. I may need a doc in STL to consult.

REPLY

Here you go. Great team there at the Siteman Clinic.
https://siteman.wustl.edu/doctor/jeff-michalski-md/

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@robertmizek

Hi Kevin. Thanks for the thoughtful response. That’s a lot of great information there. Looking at your history you’ve had quite a ride haven’t you?

I’m 3 months away from turning 69 YO. No co-morbidities. 30 BMI. I exercise 5-6 days a week. I don’t smoke, drink, or use recreational drugs. Avid cyclist.

I was first diagnosed in 2020 with Gleason grade 6. I opted for focal brachytherapy and all indications were that I was disease-free until March 2023 when my PSA started to rise. My urologist was also my radiologist so when he went on medical leave (and never came back) I couldn’t find anyone in the Chicago area familiar with brachytherapy I had to travel to St. Louis for consultation. A PET-PSMA scan and 3T MRI showed two lesions. One at the site of the failed brachytherapy and a second in the untreated area of the prostate. Also 2 pelvic lymph nodes. Treatment in st. Louis would’ve required my wife and I to move down there for at least two months so I sought treatment in Chicago.

I went to Northwestern Medicine in Chicago. They felt that I was a good candidate for salvage RP which as you likely know is seldom performed after radiation. I had surgery in January. They removed the prostate and every local lymph node they could reach. 3 mos post surgery I’m doing well. Pathology showed one lesion Gleason 9 (4 +5) and the second lesion Gleason 8. Post surgery PSA Nadir at 0.43. The surgeon was unable to safely remove one of the suspicious lymph nodes so the plan is to go after it with ADT and radiation to the pelvic lymph node basin. The current plan is 33 sessions over seven weeks. They’ve got baseline numbers on everything and will do regular bloodwork.

I’ve met with a personal trainer and have developed an upper body exercise routine, using my bowflex and a lower body workout routine using ankle weights and or the bowflex. I have both a recumbent trike and a cyclocross two wheeler and hope/plan to include cycling in my effort to maintain strength and muscle mass.

Jump to this post

May I ask what surgeon at Northwestern performed your RP? I’m considering surgery also. Thanks.

REPLY

Happy to help you. My surgeon was Dr. Ashley Ross. I cannot say enough good things about him and I genuinely feel blessed to be one of his patients. He and Dr. Tim Kuzel my Oncologist have put together a great plan to give me the best shot at a cure.


https://www.nm.org/doctors/1891840641/ashley-evan-ross-md-phd

https://www.nm.org/doctors/1851325088/timothy-m-kuzel-md
Best wishes for success with beating PCa!

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