Hi Everyone, I might get long winded in this, so the brief summary is: rechallenged with Pluvicto after a 4-year break while enhancing PSMA expression with darolutamide. PSA dropped from 44 to 3 after two treaments. I have lymph-node metastatic disease with neuroendocrine differentiation.
I was on the PT-112 trial NCT02266745 in fall of 2023, and progressed in December 2023. My docs wanted me to take a bit of a break, and I didn’t realize how much I needed it, I think the amount of platinum in me really fogged out my brain and it began to really clear in January/February though I have persistent shortness of breath that made my ski season a challenge (do I go get a beer or oxygen after skiing?)
My PSA skyrocketed to 45, where my highest ever had been just over 5, and though my doc was suggesting trying a PARP inhibitor, I wanted to do something with what I thought would be a higher chance of success. My PSMA PET showed that my lymph node SUVs were around the 30s, while back in 2019 they were over 100, making us conclude that I’d be a good candidate for a second round of Pluvicto but not to expect the stellar results that I got in 2019-2020. Back then, I commuted across the Atlantic from the US to Munich through the pandemic, an amazing experience flying internationally on almost empty wide-body jets.
Since I had read about enzalutamide enhancing PSMA expression, and since I had not had any additional hormonal treatment (other than ADT) since I stopped abiraterone in 2019, it made sense to give this a try at the same time. And that’s where the fun began.
I started on samples while the prescription paperwork went through. After two days on apalutamide, I went to the bathroom and there was a water balloon where my penis used to be! I took a couple of days off and took diuretics, then tried some enzalutamide samples. This time I had the same swelling PLUS cramping in my hands! Again, took a couple of days off, and then went on darolutamide. It was such a relief, as my head felt like I was in a fishbowl on the first two drugs, but I was clear on the darolutamide. But the edema crept back in, and I decided to continue, see a lymphedema therapist, and tough it out until I had done the two Pluvicto treatments. The month on these -lutamides alone dropped my PSA from 45 to 30, then the first Pluvicto treatment dropped it half to 15, the second dropped it down to 4. By this time, the lymphedema all through my groin had my scrotum consuming my penis, and I had to come up with different approaches to coaxing it out to pee. It was like I was walking around with a grapefruit in my pants (cue @j-o-h-n). My doc said, “I’ve never seen anything like this,” and after the second Pluvicto treatment I stopped the drug and the edema immediately started getting better.
Surprisingly my PSA continues to decline two months after the second treatment, and we’re just going to see where it goes on its own. I have been prepared to go back on darolutamide since it seems to help so much, but my doc also warned about overtreatment, that the more you pound on it, the more the cancer finds ways around it and the more virulent it becomes. So for now, I’m delighted to be feeling much better and getting my summer bike rides again.
As another member commented, I too saw my daughter’s high school graduation this spring, something I doubted I would see back when I was first diagnosed. I have been feeling light of spirit with this huge accomplishment done and seeing her off to college this fall.
PSA showing .014 - concerned?
Boner during shower 
Appointment with Provenge doctor
NCT04662580 - All about ARX517 as Monotherapy
