Can anyone share their experience with Pluvicto?
My 85 year old dad has prostate cancer that has metastasized to his bones. Zytiga is no longer effective. He is considering Pluvicto. I would appreciate input from those who have used Pluvicto.
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I was one of the original clinical trial patients for what is now, Pluvicto. The pharmaceutical company, Novartis paid for that first round of treatments. I'm 4 of 6 treatments into my "repeat", and Medicare and my supplemental insurer is covering the costs. As you stated and as I learned, Pluvicto is only approved for one set of 6 treatments. So, to answer rayde0's question, I do not know and have not heard of a way to have the repeat round of treatments paid without being a clinical trial patient first.
I hope my experiences and outcome, so far extremely positive, will be a driver for the USFDA's approval of a second round of Pluvicto. But for now, I cannot help you. I know it's easy to say, but stay positive.
smc24,
I completed my 6th Pluvicto treatment Feb-24 and PSA was .2 until Dec 24 now PSA at 3.
Have contacted my MO for re-treatment of Pluvicto, but not covered by insurance; can you advise me best way to get another 6 treatments.
Best to you
Did you have to take hormone stuff before starting this?
not yet. That's why I posted the question?
@sillyoyster, were you able to ask your cancer team about these important questions about radiation exposure? Can the butterfly needle be used for you for Pluvicto infusions or how are they making delivery easier for your viens?
I received the first 6 Pluvicto infusions from Aug 2023 to April 2024 with very good results until Dec 2024 PSMA PET scans showed slight progression. I'm also approved for an additional 6 doses and got #7 last week. Same effects as always, slight flu like feeling fo 3 days but good now.
I'm younger (64) and have been fighting this already for 11 years , diagnosed in 2014 already inoperable stage 4 metastatic to pelvic region. I belong to several Pluvicto support groups and from what I've read on those, IMHO...non medical opinion, Pluvicto is good for people in reasonably good overall health. More elderly and frail people taking Pluvicto seem to have had bad outcomes, having to stop early and going downhill fast afterward, or dying during treatment. I think some good base overall health guidelines need to be established to screen prospective patients, not just blood work. Body condition and mass etc. need to be considered. They are starting Pluvicto earlier on, before chemo in some cases which may be a good idea as someone might not be dangerously "run down" from other treatments. ALWAYS discuss this with your doctor. I am not medically trained and my comments are purely from personal observations and reading. Best wishes to all.
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2 ReactionsBased on my experience after receiving my 10th of 12 treatments (yes, that two rounds over 4 years), the first 6 being the original clinical trial, here are my comments.
I get a little bit of radiation sickness the day after with milder symptoms the following few days. A mild headache, upset stomach and a little fatigue. Mostly annoying. A very mild diet of mostly chicken noodle soup and mashed potatoes is my comfort food. I take pepsid (not Pepsi) to reduce stomach acid starting the day before and as needed for several days after each treatment. And, I keep Tums and some antinausea tables (left over from my chemo) nearby to settle that jumpy stomach. It really hasn't been too bad at all.
The Pluvicto literature describes the radiation precautions based on it's half life of about 6-7 days. It's 3 days of not sleeping beside or spending hours within a few feet of someone including pets, babies, pregnant women, etc. But, you can be in the same room while staying a reasonable distance apart. The radiation is expelled mostly through body fluid; urine, saliva, sweat, exhaling vapor, etc. I store and wash my close separately for a week or so, don't share food, towels, etc. I carry a pocket size geiger counter (from my clinical trial days) and can see exactly how quickly the radiation value declines, comparing them to published charts. In 4 or 5 days, I return to a normal life being a little cautious. Drink lots of fluids to flush it out of your bladder and colon. You don't want that radiation hanging around there too long.
I could go on, but in reality, FOR ME, it's not a big deal. Listen to to radiation specialists and use common sense. The more you educate yourself, the easier and less fearful it will be. Just do it.
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5 ReactionsMy husband is starting Pluvicto soon and do you have any suggestions regarding diet and anything else to get him through it? I have also asked for resources to educate myself on how much I should worry about the exposure at my age of 81/ Thanks so much and sending love, light and healing ,Lynne
What’s is missed here is there is a major difference between the radiation you get from something liked Pluvicto and getting the maximum radiation from prostate bed treatment.
It is just not affecting the body of the same as getting more radiation to the prostate bed After having the maximum.
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2 ReactionsSmc24, I think you really distilled this sometimes irrational fear of radiation to that single point; death could be the side effect of NOT having it!
What many don’t get is that it is the full body, non-targeted radiation you get from suntanning and frequent air travel (flying at close to 40,000ft) that can cause issues as well. The effects are insidious and we really have no long term studies to show what cancers - other than skin cancer - might be in the offing.