Pluvicto 4, 5 & 6

Zach: Doctors don’t give a shit about me.

Zelda: You don’t believe that.

Zach: Hell if I don’t. 

Zelda: The nurses care.

Zach: I said the docs. And they don’t fucking care. To them, I’m just a guinea pig. 

Zelda: They’re doing their best to help you.

Zach: They don’t care about helping me. They can’t help me. All they care about is research.

Zelda: They do care about that.

Zach: I want you to make me a T-shirt that says, “GUINEA PIG.” And I wanna wear it to my next Pluvicto. 

[Zelda]: To be clear, Zach has been frustrated with his care team recently, and he has every right to be. They postponed a video call with his oncologist the morning of the appointment without so much as a phone call. We only found out when we signed in and tried to start the call. Their excuse was that they wanted to give Zach more time to heal after his surgeries. But he was already healed and planning on getting his 4th Pluvicto treatment. He wanted to get it over with and be ready for a family visit in a few weeks. Postponing the treatment wrenched all his plans. 

There was more the care team hadn’t told us: The treatments were having mixed results: some lesions seemed to be shrinking, but others were growing. Fast. So they wanted him to get another PET scan —his 5th; a special FDG (fluorodeoxyglucose) scan —before his next Pluvicto treatment. That scan would take a closer look at some new prostate cancer lesions, and hopefully, shine a light on why the new ones weren’t responding as well as the old ones.

To Zach's point, the care team knew all that before they cancelled the video call. They also knew it was going to take weeks to get the new PET scheduled, review the results, and meet with us again. Yet they did nothing to move things along, and we lost weeks of treatment time. Zach was right: They didn’t really give a shit about him.  

So I made him the shirt.

It was a slate-gray long-sleeved tee and soft as silk. Across the chest, in bright red letters, it read: “GUINEA PIG.”

He never got to wear it to Pluvicto #4, though. 

The FDG PET scan confirmed the good-news bad-news mixed results. The good news was that the therapy was working on the older lesions, and Zach’s bloodwork showed he was tolerating it well. The bad news: New lesions were growing strong, which accounted for the jump in his PSA —it was well above 600 again (a healthy number is under 4).

I tried to focus on the good news: The old lesions were shrinking. Wasn't that worth something? Wasn't that better than doing nothing? According to the doctors, it was not. Pluvicto wasn’t doing enough to justify the risk going forward. 

So they cancelled Pluvicto 4, 5, and 6, and we’re not sure what’s next. 

There are a few more chemo drugs to try. But after Zach’s experience with Docetaxyl, chemo is out of the question. We expected chemotherapy to be difficult. I’d always heard it was a week or 2 of hell, then a reprieve week where you’re feeling better. Then another week or 2 of hell—rinse and repeat for 4-6 months. But Zach was miserable the entire time. He never got the reprieve weeks, and overall, the therapy didn’t do him much good. Zach's primary oncologist (who really does care) called Docetaxyl a bastard.

Plus, chemo left him with severe peripheral neuropathy. You know that feeling of pins and needles when your arm has gone to sleep and it starts waking up? Add fire to that mix and that’s what Zach's hands and feet feel like, every minute of every day. He’s trying different things, like alpha lipoic acid and B6 supplements, massage, percussion therapy, and red light treatments. It’s been 7 months since his last chemo infusion and improvements are minimal so far. No one knows if he’ll ever fully recover.

Meanwhile, Zach’s oncologist mentioned an immunology study he might qualify for. It’s a longshot, and they want to get a biopsy of a spinal lesion to see if it makes sense for him. Spinal lesion. Never imagined I’d need to use that phrase. The biopsy should be fairly straightforward, fine-needle and all. Still...ouch.

My hope: Zach will be accepted into the study and it will slow down the cancer. But Zach thought he was a guinea pig before, when he was getting FDA-approved therapies. I can't wait to see how he’ll feel if he joins a bonafide study.

At least he’ll have an appropriate shirt to wear.