Can anyone share their experience with Pluvicto?

I am sorry to hear about your issue but I cannot answer your question.

@rosedl, welcome. I'm bringing @northoftheborder into this conversation to address your question about not being able to walk due to metastasis. @lag is a caregiver for someone who received Pluvicto.

Rose, have you spoken to you father's care team about adaptations to the distancing precautions that you can make and provide care for your dad?

Thanks, @colleenyoung

Hi, @rosedl. I didn't have Pluvicto, so the 3-foot distancing wasn't an issue, but I can comfirm that someone with paralysis due to a spinal lesion does need a very high level of close care, from rolling them on their side to prevent pressure injuries (bedsores), to assisting them in and out of a wheelchair, to giving them their meds, to emptying their bedpan or commode chair. There's no way you can do all that from 1 metre away, so you'll need to have an urgent conversation with your father's medical team about how to minimise your own risk.

My background:

I was 56 when I was paralyzed from the ribs down due to a prostate cancer metastasis to my spine in 2021. They did emergency debulking sugery to the lesion, then post-op radiation, and later radiation to the prostate itself. They also started me immediately on hormone therapy (ADT and Apalutamide).

I defied the odds and got back to walking (with various issues/adaptations) after a couple of years of demanding physio. If it was a near-run thing for me starting at 56, I understand why it would be nearly impossible for your father at 81.

I wish the best to both of you. ❤️

My husband was told after 10 rounds of radiation that Pluvicto was the only option. He also had Spinal Stenosis. Has anyone told you how much the Pluvicto is extremely beyond expensive. After insurance it was $30000 a round. My husband passed at 76 on April 25th. We had a surprise bill as we're never told how much it was. Be careful. It's still a 30-30-30 success rate. Wishing the best.

@ewatson201 I don't want anyone to decline Pluvicto on the grounds that they can't afford it. For many in the U.S., it is covered by insurance. I don't know where you live or what kind of insurance you have, but my husband had six Pluvicto infusions in 2024 and the cost was entirely covered by original Medicare and an Anthem Medicare supplement made available to retirees by our university. So while it is a good idea to check coverage, don't assume Pluvicto isn't ever covered.

@colleenyoung Thanks, Colleen, for looping me in. Dear Rose: My husband was able to walk and move about on his own during Pluvicto. He was treated at Mayo Rochester, whose safety instructions were much less strict than those reported by some other people posting here. We were not told to keep three feet apart for any length of time, but we were advised to use separate beds and bathrooms for a couple of days after an infusion if possible. As Colleen suggests, you can ask your father's care team for specific instructions on how you can care for your father but still observe sufficient precautions after his infusions. Simply telling you to "do the best you can" isn't helpful. Good luck with getting some additional help from his providers. Sending love and strength to you....

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.

@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.

@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.

@northoftheborder

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