Can anyone share their experience with Pluvicto?

Posted by vcash @vcash, Apr 22, 2024

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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I'm scheduled to begin Pluvicto next week. I've been on ADT for a couple years, cancer has now spread to bones and PSA is up a bit.

Question is: anyone out there receiving Pluvicto ALSO being treated for Pulmonary Fibrosis? I'm taking Ofev for the PF and curious about any interactions or reactions.

thanks

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Profile picture for eugenelapietra1 @eugenelapietra1

76 years old in the same boat your dads in. Treatment #1 not bad at all, treatment #2 a little rough, Treatment #3 a total nightmare, Treatment #5 I didn't think I was going to survive. I don"t have a choice I'll take Treatment #5 and pray..........The rub is , everyone may have a different experience so I suggest gathering more testimonials . Pluvicto with all its unknowns is still the only game in town. If you decide to go through with the treatments you can contact me and I'll share with you some tips on how to make your dads trip easier. God Bless ,Gene

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My husband, age 82, had his first Pluvicto treatment last Monday. He had some mild nausea, but he continues to suffer constant fatigue and leg weakness. At this point he can't walk any distance without having to sit down and rest. I would appreciate others' experience regarding the length of time this fatigue and extreme weakness may continue. Thank you, Kathy

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Profile picture for smc24 @smc24

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.

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Thanks for your reply, will keep searching.

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Profile picture for rayde0 @rayde0

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

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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.

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Profile picture for smc24 @smc24

I need to correct @jeffmarc's comment. Pluvicto is a targeted therapy that binds to prostate-specific membrane antigen (PSMA), a protein found on prostate cancer cells.
Once bound, the radioactive component of Pluvicto releases radiation that kills the cancer cells, specially lutetium 177Lu, a highly radioactive compound. The treatment delivers gamma radiation that escapes your body and can reach others around you, especially within the first 3 days after each treatment.
I had a full 6 treatments of Pluvicto in 2021-22 as a clinical trial patient for Novartis Pharmaceutical. It was approved in the US shortly afterwards. In mid 2024, my cancer became active, again and I am one a just a handful of patients anywhere in the world repeating the 6 treatment program, completely at my own risk.
I've had numerous targeted beam radiation treatments including the prostate bed and countless PET CT scans and a recent SPECT scan. And, full chemo twice. Yes, lots of radiation. If you have reached the point of receiving Pluvicto, the LEAST of your concerns should be your life radiation accumulation. Yes, too much radiation can effect bone marrow and cause other issues, but those choices might already be out of your necessary, and life saving decision making moving forward. I'm 73, battling cancer for 10 years and so far, I'm doing remarkable well with none of the excessive radiation side effects. Good luck. Don't give up, do what you have to do.

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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

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Profile picture for eugenelapietra1 @eugenelapietra1

Had my 5th Pluvicto thursday and am feeling great. I stopped all other medication which I'm certain was causing all the chaos in my body. After 1 week I was back to normal. No hacking or shortness of breath,no exhaustion no neuropathy, no joint pain, no blurry vision, no confusion. And I sleep great. Now I'll have to wait and see if the Pluvicto has any side affects. I'm not sure what you mean , what were my symtoms? Thank you Gene

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Did you have to take hormone stuff before starting this?

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not yet. That's why I posted the question?

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Profile picture for sillyoyster @sillyoyster

Hi robert, Can pluvicto be infused with a butterfly needle?

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@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?

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Profile picture for smc24 @smc24

I was a clinical trial patient for Pluvicto Nov. 2021-May 2022, U. Of Chicago, standard 6 treatment 6 weeks apart. It was a last resort having been through most all standard protocol of surgeries, drugs, radiation, etc. I am stage 4 metastatic castration-resistant. At that time, data showed an typical 11-15 months life extension. My PSA dropped to almost undetectable, PET scans showed many tumors disappeared and others greatly reduced in size. I had a day or two of feeling mildly sick after each treatment, but very, very tolerable. It definitely kicked the can down the road.
Sept. 2024, PSA has shown slight rise and tumors are growing again. Having ruled out other options for one reason or another, many of which I have had, I have started the Pluvicto 6 treatments for the second time, completing the first (#7) three weeks ago. I follow the same post treatment isolation requirements due to the radiation. I had a week of mild upset stomach and annoying headache this time. In three weeks after the 2nd treatment (#8), I"ll have another PET scan to see how the tumors are doing. The PSA has stablized extremely low.
Thus, FOR ME, it saved my life once, so the doctors and I see this as the best option, and I'm doing it again. There is no published data on a patient going through these treatments twice.
Since Pluvicto finds and treats virtually every prostate cancer cell no mater were it is located in the body, I consider it an excellent option for a metastatic patient.

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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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Based 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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