1. < Prostate Cancer

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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markslice7 | @markslice7 | Dec 16, 2024
In reply to @smc24 "Here is my personal situation. I was a clinical trial patient for Norvartis Pharmaceutical in 2021-22..." + (show)
@smc24

Here is my personal situation. I was a clinical trial patient for Norvartis Pharmaceutical in 2021-22 for what became Pluvicto. No insurance was involved. 2 years later, the prostate cancer has returned and I am going through the same 6 Pluvicto treatments again, but this time Medicare and my private insurance in paying. My oncology group worked with and obtained approval from the insurance providers.
So, I'm assuming insurance would NOT pay for the treatments twice (6+6=12). I have heard of, but do not know of anyone personally, except myself repeating the treatments.
Six teatments are about $300,000 plus peripheral costs of maybe $25,000-50,000.

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Thanks for sharing your Pluvicto infusion story... I just finished my six infusions. I had a PSMA scan after the first four infusions, and it showed that the infusions had been beneficial in regards to my bone metastises... Question for you--- Did you have any bone scan (not bone density) after your fourth infusion?? If so, did you then have another scan after your sixth infusion to see what benefit there was (or not)??

Thanks again for your time/information... Mark

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smc24 | @smc24 | Dec 17, 2024

Yes, I had PET CTs prior to (2021), mid way through and after (6-22) my Pluvicto treatments. The treatments resulted in a remarkable reduction of lesions/tumors. Two years afterwards (6-24), things turned down, again and I am repeating the full 6 treatments under a very special arrangement. After the 3rd, treatment, 9 overall to-date, I had another PET CT to confirm the treatments are working, again. They are, and I will continue to receive the last 3 within the next 18 weeks.

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redroadtraveler | @redroadtraveler | Dec 25, 2024

I am 81 years old, coming to the end of the proverbial five year life cycle of stage IV prostate cancer which has metastasized throughout my bones and lymph nodes. I have had every treatment protocol available except chemotherapy which was my choice to not have.

I took the full Pluvicto course of six infusions, six weeks apart. I have to say I am the poster boy for Pluvicto. I tolerated it quite well. That is not to say that your results would be the same.

Every treatment has its better days and worse days. For me, the Pluvicto course was filled with way more better days than worse.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 27, 2024
In reply to @preservationworks "I am a 72 yr old dealing with the same thing all of you are, stage..." + (show)
@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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smc24 | @smc24 | Dec 27, 2024

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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beavers | @beavers | Jan 18 3:00pm

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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2 replies
jeffMar | @jeffmarc | Jan 18 4:51pm
In reply to @beavers "I am an active 86 year old and have prostate cancer. I complete chemo in April..." + (show)
@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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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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1 reply
beavers | @beavers | Jan 19 7:41am
In reply to @jeffmarc "Some people have some major side effects from Pluvicto, most don’t. I have heard at least..." + (show)
@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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proftom2 | @proftom2 | Jan 19 10:26am
In reply to @beavers "I am an active 86 year old and have prostate cancer. I complete chemo in April..." + (show)
@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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1 reply
beavers | @beavers | Jan 19 12:58pm
In reply to @proftom2 "I start Pluvicto January 20th. Scheduled for six treatments 5-6 weeks apart. Should be interesting. I..." + (show)
@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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