End of treatment (I hope)

Posted by garylr @garylr, Mar 19 8:21am

First diagnosed in April 2023 at age 66, after blood work for a routine physical came back with a PSA of 8.2. Urologist re-ran the blood test, and it returned a PSA of 6.5. MRI indicated a couple of PI-RADS 4 lesions, confined to the prostate. TRUS biopsy came back positive for the areas the MRI had highlighted - Gleason 6. Started active surveillance. Next PSA, October 2023 was down to 5.7.

Then blood work last April came in with a PSA of 9.1. Re-test by the urologist came back at 10.9. Second MRI report said nothing had changed. Second biopsy (a "saturation" biopsy, with 28 cores) came back with a mix of Gleason 6 and Gleason 3+4 results. Genomic test score put me at a little above average risk for adverse results. So we decided to treat it. I was leaning toward radiation therapy and Urologist and Radiation Oncologist both said I was a good candidate, so we went that route, along with six months of ADT.

3-1/2 weeks into ADT (and about a month before the start of radiation treatments), blood work had my PSA down to 3.4 and T down to 7 (from 485 in April). So the Orgovyx was doing its job.

Wrapped up 28 sessions of EBRT on 12/31/24. Side effects from that have pretty much disappeared. Took the last of 180 doses of Orgovyx this morning. Looking forward to a slow climb back to something resembling "normal" starting tomorrow.

Have a blood draw scheduled for 4/14/25 - the first since the end of radiation. I have my fingers crossed!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

psychometric | @psychometric | Mar 19 8:45am

How was the Orgovyx?

garylr | @garylr | Mar 19 9:54am

In reply to @psychometric "How was the Orgovyx?" + (show)

The Orgovyx was not awful, but not a lot of fun, either - I'm glad to be going off it.

Hot flashes started after the first week. Mine seem to alternate with chills - five minutes of sweating (like, dripping down my neck sweating) followed by a few minutes of shivering. This has been an on-again, off-again phenomenon. I'll go a week or two with nothing bothersome, and then they'll be back for a few days. Exercise seems to help. Hot beverages and alcohol seem to be triggers (for me).

Difficult to achieve an erection after about a month on the drug. A little distressing, but since it also drove my interest in sex to zero, not a big deal (after I explained the situation to my wife). But I am hoping that this will improve going forward.

Significant weight gain (~20 lbs, from a starting point of 195 lbs) - mostly in my midsection. I'm pretty sure I've lost muscle mass - so the 20 lb weight gain is probably more than 20 lbs of fat. Tried to maintain an exercise regimen, but between the fatigue/laziness from the Orgovyx and the winter blahs, it was hit-and-miss. (And I've never liked the weight room anyway.) That's something I hope to work on over the next few months.

I'll find out next month how my kidneys, liver and blood sugar are doing - all of that was fine a year ago.

bens1 | @bens1 | Mar 20 6:22am

@garylr sounds like you are managing things well.
Just curious. Do you know the radiation machine used for your EBRT?

jerrytomson | @jerrytomson | Mar 20 6:23am

It sounds like you've been through quite a journey, and it's great to hear that you've completed your treatment! Wishing you a smooth recovery and a steady return to normal. Hope your upcoming blood test brings good news—fingers crossed for you! Stay strong! 💪😊

scottbeammeup | @scottbeammeup | Mar 20 6:40am

Congratulations on finishing your treatment. Mine was similar to yours: SBRT and six months of ADT (3 of Lupron and 3 of Orgovyx). It took me about a month to start feeling like a human being but the chills went away fairly quickly after stopping. I was lucky not to lose sexual function during treatment, but did become anorgasmic and that went away about two months after stopping.

Not to be a Debbie Downer, but I would ask for a DEXA (bone health) scan after about three months off ADT. I was shocked how quickly my bones deteriorated after just six months of ADT even with strength exercises and taking Calcium and Vitamin D.

Good luck on your recovery!

garylr | @garylr | Mar 20 7:36am

In reply to @bens1 "@garylr sounds like you are managing things well. Just curious. Do you know the radiation machine..." + (show)

It was a Varian TrueBeam linear accelerator. X-ray and CAT scan device.

I had fiducial markers implanted to help with targeting and a SpaceOAR hydrogel pack injected to reduce collateral damage to my rectum.

garylr | @garylr | Mar 20 7:38am

In reply to @jerrytomson "It sounds like you've been through quite a journey, and it's great to hear that you've..." + (show)

@jerrytomson - Thanks for your support!

I'll report back next month after I have test results and talk with the RO.

garylr | @garylr | Mar 20 7:52am

In reply to @scottbeammeup "Congratulations on finishing your treatment. Mine was similar to yours: SBRT and six months of ADT..." + (show)

@scottbeammeup - Thanks for your support!

I'm expecting the return to "normal" will take a while, and I may never get all the way back to where I was. But it's good to hear that someone else has recovered well.

I do plan to ask for a bone density scan this summer. Good news is, I had one done last summer, before starting treatment, and it came back with all t-scores around +1.0 - so I started from a good place.

My understanding is that Medicare only pays for a bone scan every two years, unless "medically necessary." But I figure six months of ADT indicates medical necessity. 😉

michaelcharles | @michaelcharles | Mar 20 9:59am

In reply to @garylr "The Orgovyx was not awful, but not a lot of fun, either - I'm glad to..." + (show)

Yes, managing ADT SEs is a challenging slog.
Best wishes

rparsons | @rparsons | Mar 23 3:43pm

Gary, I too will have my blood drawn next month around the same time as yours. First one since I ended hormone therapy.
I also did 28 rounds of radiation & 18 month of adt. I have to admit I am a little nervous. Are you experiencing any anxiety, or are you calm as a cucumber ? 🥒