Can anyone share their experience with Pluvicto?

@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.

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 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.

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

@jeffmarc

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

@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.

@northoftheborder

Thank you for the reply, it's always an "unknown," such is life, right?!

@cencalwife wrote "Not to be a Debbie Downer, but I've read that Pluvicto studies show an average 4mos. increase in live expectancy. I'm aware could be more, but do the benefits outweigh the risks?"

I'm sorry for everything you're both going through, especially the ADT side-effects.

I just want to add one note that may or may not help (I may also have mentioned this in a comment earlier in the thread replying to someone else).

Usually an average number like "4 months" is a median, not a mean. In other words, half of Pluvicto patients had less than a 4-month increase, and half had more. So you're right that it could be more, but for some in the fortunate half, it could be a *lot* more; with patients who were still alive at the end of the study, they don't know how much extra time Pluvicto will give them.

Best of luck with the next treatment steps, whatever the two of you choose.

@cencalwife
He got prostate cancer very young. Has he had hereditary, genetic testing? This could be caused by a genetic problem, and there are drugs for two of the genetic problems.

Pluvicto has some issues

Be aware that it works really well for 33% of people OK for 33% of people and not at all for 33% of people.

If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.

If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant.

Hello all! There is a lot to read here. My spouse was diagnosed almost 8yrs ago at 51. It's been a long road, at time of diagnosis, it had already metastisized to lower back. It is now in his skull, lymphnodes, femur, arms and ribs. He's been on Lupron, Orgovyx and now Nubeqa, which he'd been on previously and it wasn't really effective.
Thing is, Lupron and Orgovyx cause so many side-effects, some being high bp and heart palpatations, sometimes sending him to the ER.
That is why the UCSF team is now trying to get him ok'd for Pluvicto. I have been trying to do my homework and see what we are looking at. (We) since this is something that is fought as a team. I'm sure most of you may agree so much goes into outcomes or at least quality of life. Outlook is everything and not everyone has such encouraging attitudes towards dealing with illnesses.
Not to be a Debbie Downer, but I've read that Pluvicto studies show an average 4mos. increase in live expectancy. I'm aware could be more, but do the benefits outweigh the risks?
My spouse already has a lot of pain, he is a contractor and while he no longer yields a hammer, work takes a toll, as does the stress of "C."
I appreciat this thread and hope others can share similar concerns or experiences.