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Can anyone share their experience with Pluvicto?
Prostate Cancer | Last Active: 9 hours ago | Replies (290)Comment receiving replies
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.
Replies to "Hello all! There is a lot to read here. My spouse was diagnosed almost 8yrs ago..."
@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
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.
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@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.