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.

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@ljbeeson

I cannot express my respect and gratitude for your information. My husband was just told he must start that at UCSF as soon as it gets set up. I have lots of questions and one of the first ones is how about transporting my husband home in the car after treatments. Is a hazmat suit crazy I see they sell on Amazon. I hope to stay in touch with you and I send you love, light and healing in your journey. The doctor really didn't go over any choices or side effects and told us how lucky my hubby was that this treatment is available now. It is so important to know how to minimize suffering and side effects and protect one's family and friends. Thanks 'Lynne

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I am the poster boy for the Pluvicto treatment, having gone through all six treatments with minimal side effects and maximum benefits.

In my opinion the hazmat suit is overkill. I DO however highly recommend you get a dosimeter (about $100 from Amazon) and daily monitor your readings at RMS length and t skin level. We are an hour and a half drive home after the treatment and felt it worked ok to just sit the patient as fr away from the driver as possible for the drive home.

Although for me the Pluvicto treatment I would count as a success, at this point I have lost the battle. I am on hospice care on my last legs awaiting my final journey.
Unfortunately there is no cure. Every treatment, no matter how good, is simply a delay. In my case I was able to delay about five years and maximize my quality of life during that time.

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@ljbeeson

I cannot express my respect and gratitude for your information. My husband was just told he must start that at UCSF as soon as it gets set up. I have lots of questions and one of the first ones is how about transporting my husband home in the car after treatments. Is a hazmat suit crazy I see they sell on Amazon. I hope to stay in touch with you and I send you love, light and healing in your journey. The doctor really didn't go over any choices or side effects and told us how lucky my hubby was that this treatment is available now. It is so important to know how to minimize suffering and side effects and protect one's family and friends. Thanks 'Lynne

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How long is the drive home? Back seat may do. 3’ apart is pretty safe.

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@redroadtraveler

Pluvicto update:

I had my fourth Pluvicto infusion last Wednesday, Today is Saturday, three days after the infusion. As you know if you have been following me on this thread, I have a dosimeter (geiger counter) which I purchased from Amazon for about $100 and use it to monitor my radiation levels. Their generic guidelines tell you to stay three feet away from everyone for three days (a week from small children and pregnant women) and sleep in separate beds for that three day period. If you just follow these generic guidelines you are led to believe that after three days you no longer pose any danger to anyone else (what I call "collateral damage") and it is perfectly safe to resume "normal" life. I disagree. My dosimeter radiation reading at the end of three days is still 1.86. That's maybe half of what it was when I left the treatment center three days ago but, in my opinion, still poses a significant risk to others. They try to minimize the risk, I suppose trying not to scare you in this area that few of us know anything about (but we become knowledgeable out of necessity). They tell you not to worry, that any exposure to others is minimal and can't even begin to manifest any signs or symptoms for twenty years. Well, just think about that for a minute. If you expose your 25 year old grandson or granddaughter to your still ongoing radiation emission you are opening them up for potential problems when they become 45. I choose not to do that. I start by isolating myself not for the three days they tell you is "safe", but rather I isolate myself for a week to begin with, and then allow limited contact for another week.

I will update everyone again at the seven day mark after infusion.

Hope my experience will be helpful to others currently undergoing the Pluvicto treatrment or contemplating doing so. My side effects have been tolerable and manageable. My primary side effect is constipation. That is not the same for everyone and others in this thread have had much worse side effects, so just be cautious and monitor your side effect reactions closely.

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I cannot express my respect and gratitude for your information. My husband was just told he must start that at UCSF as soon as it gets set up. I have lots of questions and one of the first ones is how about transporting my husband home in the car after treatments. Is a hazmat suit crazy I see they sell on Amazon. I hope to stay in touch with you and I send you love, light and healing in your journey. The doctor really didn't go over any choices or side effects and told us how lucky my hubby was that this treatment is available now. It is so important to know how to minimize suffering and side effects and protect one's family and friends. Thanks 'Lynne

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@proftom2

I start Pluvicto January 20th. Scheduled for six treatments 5-6 weeks apart. Should be interesting. I am classic 5 year aPC journey guy, terrible first year, followed by 2+ years of declining PSA (Hormone Therapy Responding) and now 1+ years slowly rising PSA. Next stop Pluvicto, after that we'll see.

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Looks like we are in the same boat.
I started with hormone therapy in 2012, then seed implants in 2014 while continuing the lupron therapy. My PSA started rising the fall of 2023. I started chemo then and finished 9 treatments of the chemo April 2024.
I had a PET scam last week and I am scheduled to see
my doctor this coming week.

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@beavers

I am an active 86 year old and have prostate cancer. I complete chemo in April 2024. My PSA was 88 and came down to 9.5. Now it has gone back up to 44. I think Pluvicto is next. Can anyone tell me their experience with Pluvicto? I haven't decided my next step yet.

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I start Pluvicto January 20th. Scheduled for six treatments 5-6 weeks apart. Should be interesting. I am classic 5 year aPC journey guy, terrible first year, followed by 2+ years of declining PSA (Hormone Therapy Responding) and now 1+ years slowly rising PSA. Next stop Pluvicto, after that we'll see.

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@jeffmarc

Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

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. I don’t know if these are the only hereditary changes that cause Pluvicto To work much better or more poorly.

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Thanks for the info.
This is the first I have heard about Genetic issues.

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@beavers

I am an active 86 year old and have prostate cancer. I complete chemo in April 2024. My PSA was 88 and came down to 9.5. Now it has gone back up to 44. I think Pluvicto is next. Can anyone tell me their experience with Pluvicto? I haven't decided my next step yet.

Jump to this post

Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

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. I don’t know if these are the only hereditary changes that cause Pluvicto To work much better or more poorly.

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I am an active 86 year old and have prostate cancer. I complete chemo in April 2024. My PSA was 88 and came down to 9.5. Now it has gone back up to 44. I think Pluvicto is next. Can anyone tell me their experience with Pluvicto? I haven't decided my next step yet.

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Interesting about the gout like pain you described, @preservationworks. I've gone through chemo twice and Pluvicto. I'm currently repeating the full 6 Pluvicto treatments, now 9 total, 3 more to go. I had gout in my big toe a 40 years ago, so I know how that feels. I'm not a doc, but I'd have to say, I do not know of an association between Pluvicto and traditional gout systems. Please post any news you find. I'd be interested.

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@preservationworks

I am a 72 yr old dealing with the same thing all of you are, stage IV Prostrate cancer. Diagnosed about 10 years ago. Redroadrunner could have written my story, with the exception of I did go through chemo to arrive at Pluvicto.
Interesting how many of you bought Geiger Counters, I thought I was the only one, or at least in the minority.
I just received # 3 infusion about a week ago and the side effects, although not terrible, are worse.
Strangely I seem to have developed the symptoms best described as gout.
Pain in the joint of my big toe. This is what brought me to this website/thread.
I’m not sure it is a side effect of the Pluvicto, but I’ve never had gout before and I there is nothing in my diet that would cause it.
I didn’t “flush” (drink water) as much as I should have yesterday and the pain, that was subsiding, is worst today.
I am only halfway through but so far the side effects are fairly mild. Chemo was much worse.
I’ve always taken the approach that doing nothing was not an option. So I will take advantage of whatever treatments are available.
My quality of life is still very good and as long as that is the case I will continue.
Thank you all for your posts, I enjoyed reading them very much. We’re not alone.

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@preservationworks, welcome. Pain in your big toe is quite specific. metas2019 mentioned weakness in this discussion:
- Knee / thigh weakness after Pluvicto? Knee / thigh weakness after Pluvicto?

Are you noticing joint pain any where else?

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