I am part of the "Pluvicto Patient Support Group" on facebook. There are so many negative comments and reviews about Pluvicto and I do not find a similar experience here.
Does Pluvicto is Not effective at all?
FB Pluvicto Patient Support Group - Advanced Prostate...
FB Pluvicto Patient Support Group
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God_Loves_Me
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My husband has had 2 injections so far. PSA went from 36 to 41 after the first one and is now back to 36. He gets his third injection in a couple of weeks. His blood counts have taken a big hit but so far in range to continue (i.e. Neutrophils are 1600).
Pluvicto was approved because it was proven to work. It is a mistake to get your medical info from social media.
Agree but Tall_Allen I am not talking 5 comments. All posts are so negative. I was shock.
People write to complain, not when everything is going as planned.
Not everyone. I am a big complainer but also give praise when I feel it is justified. Yes it is certainly true that people are more likely to complain but if something is good occasionally there will be someone saying so. On forums and user sites I go out of my way to praise the few things that I think are great and that everyone should know about.
If Pluvicto were so great you would think there would be a few people saying so. My experience with Pluvicto is so so. I do not feel justified in complaining but also have not found it to be that great. In fact my oncologists have decided to put my treatment on hold and use focused radiation instead partly because Pluvicto needs major improvement. It is pretty much old technology of its kind and is likely to be replaced very soon by better nuclear medicine.
Yes it might have been "proven that it works" but that is if you think a mean progression free survival time of 6 more months compared to other treatments is such a big deal. They also tend to downplay the side effects.
There are hopefully much better treatments in the pipeline.
Bad news, travels fast! Good news very slowly.Exact same for reviews. People commonly complain more than comment positively.
in reply to Tall_Allen
The Pluvicto site is a private group only open to those receiving or those who have received Pluvicto. It is the real deal. There are over 700 members and the admin works at a Center of Excellence and has personally given over 500 doses.
Maybe lighten up on groups you don't know about and stick to negative commenting on social media sites like HealthUnlocked?
That being said, God Loves Me, I agree that the people who comment do tend to have not so great outcomes. Some are really scary. Pluvicto has been really hard on my husband but what alternatives are there when the options are all used up?
Tall_Allen in reply to
People who take the time to write into any group are usually the one's who have problems.
People like yourself who regularly misinform others are often prevalent on such groups. A recent survey of facebook groups like the one you are endorsing found that ⅓ of the information was wrong, and much of the misinformation could seriously injure patients. From your past posts, I think most patients on this forum know you are not a good source of credible info, but feel free to show any credible info you imagine you have.
When you say "proven to work," does that mean essentially a few months of life extensions, or something more dramatic?
I don't think that any of the studies or the makers of Pluvicto claim anything more than a few months of life extension or progression free survival. That can be very useful if it makes you survive with less pain for long enough to try something that might work better. For me it minimized the pain in two major lesions which was nice but it was decided to switch me to targeted radiation instead. And this decision was made by people with "a vested interest" in continuing Pluvicto for their research. Fortunately people whom I trust. I am fortunate to have both medicare and private insurance so I pay something like $350 for each treatment. Insurance actually paid $47,500 for each treatment. And who knows what a private payer would pay since the "billed cost" was $244,700. So yes it is great but not that great.
It works as well as all the other medicines approved for mCRPC after docetaxel: Xtandi, Zytiga, Jevtana, Xofigo, Provenge, PARP inhibitors for BRCA+, and Keytruda for msi-hi/dMMR. Like most medicines, their full potential will be realized when they are used earlier and in combinations.
Got it, thanks.
Means docetaxel is importants and After docetaxel all other medicine has more effects Thank you so much Tall_Allen.
It means that medicines are tested in the most progressed men first - metastatic and castration-resistant who have already had docetaxel. You are right that there are always more side effects in more progressed patients.
I may know something about how medical science works that you don't. If you are interested in learning, instead of being the poster child for the Dunning-Kruger Effect, read this:
Facebook group…that’s all you had to say. Best of luck.
Pluvicto works. Since it doesn’t cure anyone, works only to varying degrees and has side effects it is predictably set up to be demonized.
It is also sometimes irresponsibly prescribed, or continued, when it it isn’t working, or it’s too late. Sometimes patients and/or their caregivers will insist on it in these conditions out of desperation. This is true of other treatments as well, and is a difficult and painful reality.
It also has nothing to do with Pluvicto per se.
Of course we all want better. For all its flaws Pluvicto is simply one of the best of the few newer treatments available.
Without a doubt complainers and misinformation peddlers dominate social media sites, and for that Facebook is king.
Pluvicto bought me maybe a year plus but my PSA continued to rise after the 6th infusion. Initially I responded very well. Presently doing BAT which is effective so far and improves QOL.
in reply to Ramp7
My husband has done both BAT and Pluvicto and BAT was by far a better treatment for him in every single aspect (reducing cancer, feeling better, improving quality of life). It is early days for his Pluvicto treatment and whether it will extend his life, but it hasn't improved his quality of life much if at all.
FWIW, I had six treatments, finished December 2023, and I am in complete remission. My pre-Pluvicto scan and post-Pluvicto scan are night and day. I realize this status may not last very long, but I am very grateful for this response since previous treatments, including docetaxel + Carboplatin, had not managed to control my PCa. My doctor told me my response was in the top 5% of patients he had seen (roughly 300), so I suspect that, for most people, Pluvicto doesn’t work too well. Hopefully, new and better nuclear med treatments are on the way.
My
My beloved husband was a poster boy for Pluvicto. PSA dropped from 650 to around 180 over 3 infusions. He felt good (the only treatment for his cancer where he felt human), had energy and was pretty much leading a normal life. Then, alas, the supply issue hit and he missed a full dose which was tacked on at the end. Predictably, the beastly disease got another grip during the hiatus and the last 3 treatments were not quite as effective. However, it brought him time to walk his niece down the aisle and have a month in his beloved mountains. Altogether, he had an extra year from Pluvicto and we made the most of every minute. We were so grateful he was a candidate.
I'm the moderator for a FB group that is for women who are dealing with their loved ones Stage IV diagnosis. You really do have to take a step back at times because most of the posts are negative, because those that are doing well don't post as often (until it goes downhill).
People need these outlets (forums, FB groups, etc.) to have a safe place to talk about the issues and problems and sometimes to hear of the successes so their loved ones can talk to their doctors about alternative treatments (and I don't mean non-science driven cures).
My husband has done really well with his treatment plan after 7 years but it's heartbreaking when those in the group lose their loved ones 3-5 years after diagnosis.
I’m about to have my penultimate treatment with no side effects. My PSA is now undetectable and I feel great. I’m a Pluvicto believer.
There is a huge difference between seeking information and just feeling sorry for yourself and venting because nothing is really going to change as a result. We are all going to die of something and the reality is our time here has an expiration date.
Ever wonder what our grandparents and others did before social media? Perhaps things were easier when the menu of choices were limited and fit on a one side of a 12x10 sheet of paper.
I can only speak from my limited experience of 80 years as I watched my parents, grandparents and others provide a model to follow. They celebrated births, marriages, graduations and reunions. They grieved sickness, deaths, divorces and they moved on. I watched them “suck it up” during the hard and lean times and move forward knowing that death was a part of life. For many religion provided a hope of eternal salvation.
So has social media become the new confessional, the new source of connection or the substitute for family and friends. Perhaps I can find the answer to those and other questions like that by using modern AI or searching the World Wide Web or asking on social media.
For some reason I remember the words a song or was it a book that stated “there is a time to be born, a time to live and a time to die”.
That was from the bible actually but the Byrds made a song with similar words. Turn,Turn,Turn.
And I have actually quoted it several times. One of two good things in the bible. Guess what the other is? That would be "The Golden Rule" in every bible and book of faith but people seem to have other agenda.
I had 5/6 infusions as part of the PSMAddition Clinical trial. The purpose of the trial was/is to test the effect of Pluvicto on men with metastatic PCA who are relatively early in their PCA journey. My PSA dropped to undetectable from a high of 49 during the treatment and tumours resolved or dropped to very low activity (noted in one site). I'm getting scans next week as part of trial follow up. The scan reports have been indicating "favourable response to treatment", but the hormone therapy is likely playing some role as well. I'm looking forward to reading published results from the trial to see what the scientific analysis of a larger dataset says about the infusions vs hormone treatment alone.
I think a lot of negativity surrounding Pluvicto is simple backlash based on the overwhelmingly positive hype before FDA approval in 2022. Not a lot of American men had access and we were hearing about miracles - pilgrimages were being taken to Germany and India for Lu177 treatment.
Now that more men are receiving Pluvicto treatment in the U.S., the data is building and the unsurprising reality is sinking in that it is just another treatment - still miraculous, in my opinion, as are all the treatments we receive - with limits to its application and having sometimes very nasty side effects. For me, Pluvicto's "superficial" side effects (pain, energy, nausea) were similar to chemotherapy but worse in terms of real effects - specifically on complete blood count (CBC).
Overall, it did knock down my PSA in a slow steady trend, but a new, PSMA-avid (?!) bone tumor actually grew in my scapula. In summary, Pluvicto is simply a treatment that we are still figuring out in terms of where it best fits in APCa standard-of-care. - Joe M
Pluvicto has worked for me - last dose 9-1-23, now PSA unmeasurable (ultrasensitive), had vertebral mets and soft tissue involvement. MedOnc says scanning useless until PSA starts to rise.
Can I ask the primary gender of who is posting on the Facebook group? Is it primarily the patient or the care giver?
more spouse and patients may be < 5%
Ok. That's probably the reason for the disparity. It's pretty well recognized that men don't discuss their well being and those that do seem to know more and the doctors 😀
Pluvicto worked for me. PSA 0 for 1.5 yrs, all scans negative. Have been off all meds for over a year. Had wide spread osseous dsease Oncologist, former full professorar MDA and now chief of uro-oncology at Methodist/Houston states I am the first patient she has ever seen or treated that she believes is not in remission but actually cured. Time will tell.
Another possibility that was mentioned in another post- the pluvicto actually did its job of killing off the cancer visible on the scans but there might be a different cancer sitting in the background. And since the one cancer was eliminated it could be the other took advantage of the “space” and goes into overdrive and makes it look like the pluvicto didn’t have any effect.
I still think the word Pluvicto sounds like the name of a Disney character.
Good Luck, Good Health and Good Humor.
j-o-h-n
I am in NO was qualified to make any statements regarding the effectiveness of Pluvicto but can relate that it's not hopeless at all! From my observations, reading and questioning... ALL me, I drew a conclusion that it's not effective for some men (some can't even finish the regime), some have moderate success and some have very good success. My husband fell into the later category and feels better now than he has in years. We were able to take a trip which we haven't been able to do since February of 2020! They told him he could even have a 7th infusion if needed. It wasn't all roses of course. The side effects got more intense with each round. But all in all, very good results.
Wishing and praying that your Dad has a similar experience!
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