Do Pluvicto patients live like those in the TV ad

Posted by soflada @soflada, Jun 9 11:51am

I'm a current Pluvicto patient who has been through Taxotere, 2 radiation sessions under a Varian Trubeam and have now had 2 of the 6 dose injections of Pluvicto. I see all the Pluvicto ads on golf and football broadcasts with all the "patients" looking and acting like they are top of the world. Yes, I know there is a proviso in the first few seconds of the ad that the people in the ad are actors. Still I would like to hope that there really is a world where patients who've been through all like me can truly be "normal." Ain't no way I'm even close to being that active. Can others hop in to let me know it is achievable?

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Profile picture for jeff Marchi @jeffmarc

I have not had Pluvicto But I attend seven advanced prostate cancer online meetings every month. I am regularly hearing about people‘s reactions to Pluvicto.

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This is what I want to hear about.

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My husband has just completed dose 2 of 6 of Pluvicto and no, he is not like the actors in the ads. From the first treatment, he suffered from extreme fatigue for up to a week post treatment, then a lack of appetite for the next week or two. Severe dry mouth is a constant. We have started the cycle over with treatment 2.

His PSA was over 200 at first treatment and rose to 360 the month following. We’ve been told to expect a rise for at least the first 2 treatments, but I fear we waited too long to begin them.

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Maybe. I just completed Pluvicto dose 4 and maybe headed to does 5 and 6. So, if you too a picture of me for an online/on-ground publication and doctored it up a bit you'd see a slightly better than average 71 year old grandfather. That might help sell a few more Pluvicto shot. However it absolutely would work for video production. I walk to slow, fatigued most of the time, and look/feel sick a lot of the times. If it was a live interview? That wouldn't happen, I hate the side effects, complain about them most of the time, and can't wait to get off the stuff. My PSA is still rising and my oncologist is taking it one shot at a time after imaging to see if it's worth continuing. Be careful, be hopeful, and look for happiness everywhere. Hope that helps.

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Yeah. The closer I get to my first infusion on 24JUN, the more I find out. Might not be the "wonder drug" my onc proclaimed it to be.
TOC

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Profile picture for kithen @kithen

My husband has just completed dose 2 of 6 of Pluvicto and no, he is not like the actors in the ads. From the first treatment, he suffered from extreme fatigue for up to a week post treatment, then a lack of appetite for the next week or two. Severe dry mouth is a constant. We have started the cycle over with treatment 2.

His PSA was over 200 at first treatment and rose to 360 the month following. We’ve been told to expect a rise for at least the first 2 treatments, but I fear we waited too long to begin them.

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Google PSA flair up Look into Xylimelts for dry mouth at CVS or Walmart

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This is my first try on Pluvicto. I've had one dose and I am literally exhausted, but have been fighting prostate cancer that is also in my liver, a lymph node and bone. My question is about end of life preparing. We were told by a PA that if you use Pluvicto you cannot be cremated. I have not been able to get clarification on this from the drug company. Does anyone know anything about this? I also have a question in to my provider but have not heard back yet.

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Profile picture for mickey44 @mickey44

This is my first try on Pluvicto. I've had one dose and I am literally exhausted, but have been fighting prostate cancer that is also in my liver, a lymph node and bone. My question is about end of life preparing. We were told by a PA that if you use Pluvicto you cannot be cremated. I have not been able to get clarification on this from the drug company. Does anyone know anything about this? I also have a question in to my provider but have not heard back yet.

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Here is what I found doing a quick AI search:

Residual radiation: The radioactive isotope (lutetium-177) in Pluvicto has a half-life of 6.647 days. This means the radioactivity in the patient's body decreases over time, but it may still be present at the time of death, potentially posing a risk during cremation.
Radiation exposure during cremation: During cremation, the radiopharmaceutical can volatilize and be inhaled by workers or released into the environment, potentially causing greater exposure than from a living patient. Studies have shown that crematorium equipment, including the oven, can be contaminated with low levels of radiation after the cremation of a patient who has received Pluvicto.
Regulations: While regulations for handling radioactive materials in living patients are well-established, postmortem regulations are less developed and vary by state and internationally. There are no federal regulations at the United States level regarding the cremation of patients treated with radiopharmaceuticals.
Risk mitigation: To minimize the risk of radiation exposure to crematorium staff and the public, certain precautions may be necessary when cremating a patient who has received Pluvicto. These include:
Notifying the crematorium about the recent Pluvicto treatment.
Waiting a period of time after the last treatment before cremation (the recommended timeframe may vary, depending on the individual case and institutional guidelines).
Following radiation safety principles, including the use of protective equipment (e.g., respirators, gloves, and clothing) by crematorium staff.
Performing radiation surveys of the crematorium equipment and staff after the cremation.
Recommendations
Open communication: Patients, their families, and medical professionals should communicate openly with the chosen crematorium regarding the Pluvicto treatment to ensure they are aware of the potential risks and can take appropriate precautions.
Follow institutional guidelines: Individual hospitals and treatment centers will have specific guidelines and protocols for handling the remains of patients who have received Pluvicto. These guidelines should be followed carefully.
Consult with a radiation safety officer: In cases of uncertainty or concern, consultation with a radiation safety officer or medical physicist is recommended to ensure the safe handling and disposition of the deceased.
In summary
While cremation is a common practice, the radioactive nature of Pluvicto necessitates careful consideration and adherence to safety protocols when cremating a patient who has received this therapy. Open communication and consultation with medical professionals and crematorium staff are crucial to ensure a safe and respectful process.

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Profile picture for lag @lag

Here is what I found doing a quick AI search:

Residual radiation: The radioactive isotope (lutetium-177) in Pluvicto has a half-life of 6.647 days. This means the radioactivity in the patient's body decreases over time, but it may still be present at the time of death, potentially posing a risk during cremation.
Radiation exposure during cremation: During cremation, the radiopharmaceutical can volatilize and be inhaled by workers or released into the environment, potentially causing greater exposure than from a living patient. Studies have shown that crematorium equipment, including the oven, can be contaminated with low levels of radiation after the cremation of a patient who has received Pluvicto.
Regulations: While regulations for handling radioactive materials in living patients are well-established, postmortem regulations are less developed and vary by state and internationally. There are no federal regulations at the United States level regarding the cremation of patients treated with radiopharmaceuticals.
Risk mitigation: To minimize the risk of radiation exposure to crematorium staff and the public, certain precautions may be necessary when cremating a patient who has received Pluvicto. These include:
Notifying the crematorium about the recent Pluvicto treatment.
Waiting a period of time after the last treatment before cremation (the recommended timeframe may vary, depending on the individual case and institutional guidelines).
Following radiation safety principles, including the use of protective equipment (e.g., respirators, gloves, and clothing) by crematorium staff.
Performing radiation surveys of the crematorium equipment and staff after the cremation.
Recommendations
Open communication: Patients, their families, and medical professionals should communicate openly with the chosen crematorium regarding the Pluvicto treatment to ensure they are aware of the potential risks and can take appropriate precautions.
Follow institutional guidelines: Individual hospitals and treatment centers will have specific guidelines and protocols for handling the remains of patients who have received Pluvicto. These guidelines should be followed carefully.
Consult with a radiation safety officer: In cases of uncertainty or concern, consultation with a radiation safety officer or medical physicist is recommended to ensure the safe handling and disposition of the deceased.
In summary
While cremation is a common practice, the radioactive nature of Pluvicto necessitates careful consideration and adherence to safety protocols when cremating a patient who has received this therapy. Open communication and consultation with medical professionals and crematorium staff are crucial to ensure a safe and respectful process.

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Have Novartis put our a statement in writing

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I recently attended a Q&A session with urologists about prostate cancer, and one radiologist was praising the merits of Pluvicto as the best thing when hormones fail, and side-stepping my question about side effects. Are any of you fellows out there that are on Pluvicto having an easy time of it with few or no side effects? This would be important feedback for the next session I attend in person.

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Profile picture for hector13 @hector13

I recently attended a Q&A session with urologists about prostate cancer, and one radiologist was praising the merits of Pluvicto as the best thing when hormones fail, and side-stepping my question about side effects. Are any of you fellows out there that are on Pluvicto having an easy time of it with few or no side effects? This would be important feedback for the next session I attend in person.

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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 genetic changes that cause Pluvicto to work much better or more poorly.

Another person’s comments
My husband had six Pluvicto infusions over most of 2024 and had none of the severe side effects that some people experience. He had some fatigue, dry mouth from his saliva glands being affected by the treatment, and his appetite for food decreased in that most things just didn't appeal to him. His last Pluvicto infusion was in August 2024, and the only side effect remaining is dry mouth.

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