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Starting Orgovyx - any advice based on experience?

Prostate Cancer | Last Active: Apr 23 3:49pm | Replies (14)
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@kujhawk1978

So, ADT and an ARI.

It would help the forum if you can provide your clinical history - date and diagnosis, any prior treatments.

My response in more general without that clinical data.

First, I would get baselines tests and labs: some to consider:

PSA
Testosterone
CBC
Metabolic Panel
Lipid (fasting)
Bone Density

I would agree on and set a schedule for consults and what labs, PSA, T, CBC and Metabolic Panel, likely every three months.

I would consider seeing a cardiologist to get a baseline cardiovascular assessment.

Since your medications require YOU to take them every day vice seeing your doctor for an injection, figure out a system that work for you to do exactly that. I have my Iphone give me a reminder each day.

Finally, understand the array of side effects and mitigating strategies:

Your responsibility: diet, exercise, managing stress, necessary sleep and rest.

Your medical team - if necessary, medications to counter side effects such as hot flashes, bone density loss, decreases in any blood counts such as WBC, RBC, what to do if labs show kidney and liver functions impacted (hydration is good!), CV issues..

Speak up with your medical team, there is no scrap of information too small for them to piece together any treatment adjustments or countering with medical interventions as and if needed.

The hot flashes, fatigue, and muscle and joint stiffness were the side effects I experienced, generally "mild" but I exercised daily, took naps when I felt like it, kept ice water handy, ran the fan at night in my bedroom, never used the heater in my car, would not wear sweaters or sweaters that required me to pull them off over my head at he first sign of a hot flash, any outer clothing had to be a fully zippered or a few buttons such as a suit coat. I would disappear to the back deck often (well, not during the summer!).

Kevin

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Replies to "So, ADT and an ARI. It would help the forum if you can provide your clinical..."
robertmizek | @robertmizek | Apr 22 9:45am

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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