Can anyone share their experience with Pluvicto?

@cencalwife
I forgot to include this Pluvicto experience.

Peter, Who runs The Reluctant Brotherhood Advanced prostate cancer online forum has had prostate cancer for 12 years. He’s had every treatment available, and it has come back multiple times. About a year ago he had pluvicto. After two treatments, his PSA dropped to .02 And he along, with his doctor, decided to stop the treatments and see what happens. After about a year, his PSA has been rising a little bit, but it’s still not 1 yet. At this point, he’s trying to decide what to do, whether or not to do another session of Pluvicto or something else first. He does have four more sessions of Pluvicto he can do.

The next meeting of that group is August 13. You could join the group and speak to Peter about what’s his feedback back is.

@jeffmarc

Thank you for that feedback. If I'm able, I will do that, depends what time the forum meets.

@cencalwife
It means that 5 PM Pacific time 8 PM Eastern.

@cencalwife Exactly. You never know.

I was diagnosed with de-novo bone-metastatic prostate cancer at age 56. I had just one metastasis (unlike your husband), but since it was on my spine and growing rapidly, it almost left me permanently paraplegic; they operated just in time, and even then, I wasn't walking unassisted again for about 2 years.

I didn't even know the odds of anything at the time, because events happened so fast — it was 2 days between

"The MRI shows a growth on your spine, possibly some type of cancer"

and

"Nurse, I just woke up from a nap and I can't move my legs"

so I didn't look like a promising case when I first met my oncologist (they wheeled me in flat on a stretcher, with a suction tube down my nose because my digestive system had shut down post-surgery and pin-pricks in my fingers due to steroid-induced diabetes). But I figured that because I was only 56, it was worth a fight, so I told the oncologists to give it everything they've got, and somehow, they believed I was serious, instead of just putting me on mild, palliative care to keep me comfortable.

Almost 5 years later, I'm still here … and walking again … and carrying my first grandson around, something I didn't expect to experience when they told me in 2021 I had 3–5 years to live (he turns 6 months old tomorrow).

So, forgive my French, but screw the odds.

That's so inspiring, thanks for sharing!! Are you still on any type of treatment?

I can see you're a fighter and that makes (at least in my eyes) all the difference in the world. Yet, as we know, not everyone has that fight and I feel it makes the outcome or at least the journey much more difficult than it needs to be. Who am I? I'm not the one with the health issues, although I did have to have a radical nephrectomy only 3mos prior to his diagnosis, thankfully no treatment and no more cancer.

@cencalwife Yes, I'm still on ADT (Orgovyx) and an ARSI (Erleada). And as you suggest, being willing to fight is only half the story, if that.

I had a childhood friend diagnosed with lymphoma in 2021, the same year I was diagnosed with stage 4 prostate cancer. He fought hard too, and initially, he was doing much better than I was (he'd ride his bike over to visit when I could barely shuffle onto the front porch using a walker, and was even thinking about dating). But his cancer took him in 2023, while mine is in full (medically-supported) remission.

A lot of it is just dumb luck. I tolerate ADT and Erleada well —just the normal side-effects like hot flushes, weight gain, gynocomastia, etc. — and because of that, I've been able to stay on them for nearly 5 years now.

Husband is 86 yrs old, pluvicto is being strongly recommended as all other treatments have run their course. He has ALL with Philadelphia Positive Chromosome which is in clinical recession, high blood pressure, depressive,
Diabetic, kidney disease, very low heart rate, anemia which he gets transfusions for, and is 100% incontinent. He is very fatigued due to medications for all of the above. Cath would be used but because of side effects making him more weak he needs a caregiver who would probably be in close proximity during the first 3 days while attending to cleaning him & flushing the urine down toilet & cleaning up any vomit or spills.
At 80 yrs of age I do not want the exposure to radiation nor do I have the physical reserve to empty cath bag every 2 hrs. Around the clock for 3 days.
Has anyone had any experience on managing all of this. He wants to stay at our camp home for the 3 days but Dr. said he needs a caregiver & I cannot do it. Not sure how quality of life will improve with Pluvicto treatment & hoping he can find a caregiver as he wants the treatment.

@kathyk46, that sounds like a very challenging sitution and hard decision making. It sounds like your husband is determined to take Pluvicto. Has his oncologist been clear about the potential side effects of treatment keeping in mind his specific health status? Have you been able to find a 24 hour carer or nurse who can care for him for the 3 days after each treatment?

How are you doing?

@colleenyoung
Thanks for the concern Colleen. Pluvicto treatment will not be done. He recently feel & broke his hip-he now has a matched set-other hip replaced due to fall in December 2025. He is still in rehab. My hope and prayer is that he embrace life & live each day as best he can. At 86 and myself at 80 life is good and I am very grateful for all we have.

@kathyk46, life and its curve balls. So sorry to hear that he fell and broke his hip. Embracing life and living each as best one can is a good motto to live by. 💚