First Pluvicto Infusion Soon

Posted by lee1447 @lee1447, Sep 16, 2024

My husband will be getting his first Pluvicto infusion in October. I am trying to obtain as much information as possible so I am able to help him along this long journey.

I appreciate reading the comments about the radiation exposure. Needless to say my anxiety level is at the top of the scale. My main concern right now, though, is how to carry on with our lives between the fusions, knowing that thebimmunity system will be low because of the treatment. The pandemic forced me into more self isolation than I needed and I want to have us live our life between infusions rather than to take extreme precautions because of the low immunity. So, I am interested in hearing how you handle those weeks. I know everyone’s experience is different, but if he feels well and lab tests are ok, what kind of “normalcy” can we expect? What do you do between infusion appointments “

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Husband just had his 2nd infusion. Almost zero side effects, slightly more fatigue on day 4. He uses his own bathroom and bedroom for 1 week. All clothing worn for the first week kept in a laundry bag for 2 weeks. Then I double wash them. He is very active, maintains 6 properties doing yard and pool care. I insist he take a 1 hour nap daily. We have 2 grand daughters that we care for almost daily. The first 3 days following treatment no contact, then stay a minimum of 6-8 feet apart for 8 days. He returns to the gym, Church after 1 week. The first shot he noticed some slight nausea, we arranged vitamin B12 shots, he gets 1 weekly, it has solved that situation. So far it has been almost sympton free, will get blood work soon to see if PSA is down.

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Profile picture for redroadtraveler @redroadtraveler

I have just finished receiving all 6 Pluvicto treatments. I am the Pluvicto Poster Boy in that I have handled these treatments the best of all patients treated by my oncology center.

I would advise you to purchase a dosimeter (about $100 on Amazon) to monitor the daily changes in radiation levels. I would rather know what's going on and be proactive than just trust and blindly follow the advice of the oncologist. I took daily readings at arms length and on my body. My personal experience and take on it is the official guidelines of staying three feet away for three days, etc. are not enough, at least not enough for me who is very concerned about "collateral damage" to loved ones and caregivers.

Based on my personal radiation readings, done every day, I isolated myself completely for the first week after treatment, then allowed myself to be in the same room with others and brief personal contact (a hug, a handshake) but no pronged contact (no sleeping together). After two weeks the radiation half life did it's thing and was negligible. So for the next four weeks it was "normal life".

I didn't feel too bad during the treatment. The usual lack of strength and stamina. My most serious side effect was constipation.

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I am talking docetaxel infusions. Met with my oncologist before my infusion and I did ask him about pluvito. He agreed that pluvicto was good, although he thinks what im doing will work and if he will try pluvicto.

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Profile picture for lee1447 @lee1447

My husband is on lupron and zytiga. He had Chemo a few years ago and, with the exception of developing neutropenia, had no other side effects. This reminds me to ask about the neutropenia risk with Pluvicto. I have a list of questions to ask the medical oncologist that I gathered from the posts I received. At this time, he is in Spain, attending the EMSO conference. Maybe he will have updated information on Pluvicto to share.
Following each other might help give both of us the support we need.
The best to you and your husband during this next journey!

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@lee1447
Hi, thank you for your post. My father has neutropenia as well and just recovered from a bad neutropenic fever. We are weighing on the possible side effects of neutropenia for Pluvicto as well. From what we have heard from many other patients, the side effects are stronger for people with bone Mets. Unfortunately, my father has lots of bone Mets. I want to ask you how your husband responds to Pluvicto? Did he experience worsening neutropenia? Did he require G-CSF for the treatment?

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Profile picture for mciao @mciao

@lee1447
Hi, thank you for your post. My father has neutropenia as well and just recovered from a bad neutropenic fever. We are weighing on the possible side effects of neutropenia for Pluvicto as well. From what we have heard from many other patients, the side effects are stronger for people with bone Mets. Unfortunately, my father has lots of bone Mets. I want to ask you how your husband responds to Pluvicto? Did he experience worsening neutropenia? Did he require G-CSF for the treatment?

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My husband had no issues with neutropenia while on Pluvicto.
Unfortunately, even though he was in the top 1/3 of the people who responded positively to Pluvicto, his PSA has started to rise. He will be starting a clinical study in February that has shown positive results. I hope your father does well. Hang in there and stay hopeful!

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Profile picture for mciao @mciao

@lee1447
Hi, thank you for your post. My father has neutropenia as well and just recovered from a bad neutropenic fever. We are weighing on the possible side effects of neutropenia for Pluvicto as well. From what we have heard from many other patients, the side effects are stronger for people with bone Mets. Unfortunately, my father has lots of bone Mets. I want to ask you how your husband responds to Pluvicto? Did he experience worsening neutropenia? Did he require G-CSF for the treatment?

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@mciao My husband developed febrile neutropenia after his first infusion of docetaxel; apparently it is quite common in that situation. However, my husband had several bone mets before he had all six Pluvicto infusions in 2024. He NEVER developed neutropenia or other effects on his white cell count from Pluvicto. Neutropenia was never mentioned to us as a possible side effect of Pluvicto by the radiation team or the urology team at Mayo Rochester either. My husband's main side effects from Pluvicto were decreased saliva, some extra fatigue, and issues with his appetite, all of which improved after he finished Pluvicto.

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Profile picture for lag @lag

@mciao My husband developed febrile neutropenia after his first infusion of docetaxel; apparently it is quite common in that situation. However, my husband had several bone mets before he had all six Pluvicto infusions in 2024. He NEVER developed neutropenia or other effects on his white cell count from Pluvicto. Neutropenia was never mentioned to us as a possible side effect of Pluvicto by the radiation team or the urology team at Mayo Rochester either. My husband's main side effects from Pluvicto were decreased saliva, some extra fatigue, and issues with his appetite, all of which improved after he finished Pluvicto.

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@lag
Thank you so much for the information! That makes me feel hopeful. I wish your husband and your family all the best!

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Profile picture for lee1447 @lee1447

My husband had no issues with neutropenia while on Pluvicto.
Unfortunately, even though he was in the top 1/3 of the people who responded positively to Pluvicto, his PSA has started to rise. He will be starting a clinical study in February that has shown positive results. I hope your father does well. Hang in there and stay hopeful!

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@lee1447
Thank you! We have been having so much set backs just on ADT and ARPI. My mom and sister are so scared.
My father's neutropenia is quite persistent, and still reply on G-CSF to maintain neutrophils counts. His oncologist is hesistanting about further aggressive treatment, but the radiation team suggested G-CSF before and after Pluvicto infusion for a trail. Good luck to your family on the new study!

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Profile picture for lee1447 @lee1447

My husband had no issues with neutropenia while on Pluvicto.
Unfortunately, even though he was in the top 1/3 of the people who responded positively to Pluvicto, his PSA has started to rise. He will be starting a clinical study in February that has shown positive results. I hope your father does well. Hang in there and stay hopeful!

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@lee1447 What is clinical trial about and where I am in same situation

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My husband will be in a stage 2 clinical study, not a clinical trial. The study is called ORIC-944. There are 250 participants world wide in it. Basically it is replacing abiraterone with one of 2 drugs that are in the study. It has shown promising results. His PSA is under 2 so he does not qualify for a clinical trial at this time. Luckily we live in a city with a major cancer center and research hospital.
Good luck as you go through this. I know how difficult it is.

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Profile picture for melcanada @melcanada

@lee1447 What is clinical trial about and where I am in same situation

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I just sent a prior message and when I just googled ORIC-944 it also mentions clinical trial. I am still not well versed on this because it came up so fast for us. It is like riding a roller coaster with all the ups and downs.

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