First Pluvicto Infusion Soon

Posted by lee1447 @lee1447, Sep 16 2:52pm

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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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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@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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My husband developed febrile neutropenia after his first round of chemotherapy (which was docetaxel years ago) and after that was given an OnPro device after each chemo infusion to inject white blood cell-building medications and prevent any further neutropenia. He has had NO neutropenia during or after his Pluvicto infusions. The Nuclear Medicine team at Mayo Rochester said that for most men, Pluvicto doesn't tank the red and white blood cells to the extent chemotherapy does.

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@lag

My husband has had both chemotherapy with docetaxel and very recent therapy with Pluvicto.
Pluvicto infusions, their effect on the immune system, and their side effects, are NOT like chemo infusions. The infusion itself doesn't take very long, around an hour. The side effects are much milder than those caused by chemotherapy. Most patients experience a dry mouth and dry eyes, and some have gastrointestinal side effects such as constipation or mild nausea. These are easily treated with Miralax and Zofran, respectively. Food doesn't taste terrible or metallic or chemical like after chemotherapy; it just isn't very appealing, and the patient may have a reduced appetite. Pluvicto doesn't have the same effect on the immune system as chemotherapy either. Lab tests are used to monitor whether the infusions are causing trouble with red blood cells, liver function, kidney function, etc. and the dose or interval of the infusions can be adjusted if necessary. My husband had lab tests a few hours to the day before each infusion, and then three weeks after each infusion, which is midway between one infusion and the next. He just finished his sixth and final Pluvicto infusion and never had lab results which caused a modification or delay in his treatments. Finally, please don't worry too much about radiation danger. It is preferable to sleep in separate beds and use separate bathrooms if possible for a few days, and to avoid having young children or pregnant people near the patient for a week or so. But there is no problem riding home together in a car after treatment, or flying home after treatment, or staying in a hotel after treatment. Your nuclear medicine team will have specific instructions for you to follow to minimize radiation exposure to others. Please don't think you need to buy a Geiger counter or isolate the patient for a week, as some men have argued on this forum. Do a search on the Prostate Cancer support group of Mayo Connect for Pluvicto entries, and pay special attention to the helpful entries by Colleen, who moderates the group for Mayo Clinic. She has laid out the current advice on radiation safely post-Pluvicto.

Please feel free to ask any other questions you have. Good luck to you both, and keep us posted.

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Thank you so much! I will be following!! 🌸🌸

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@lee1447

Thank you for your thoughtful and reassuring comments. The protocol your husband is following is similiar to the one we have….labs prior to each infusion, 2 scans after the first infusion, and a 3 week office visit after each infusion with the radiation oncologist.
I have a lot of concerns about the impact of the radiation, but, everything I was told by the medical folks here mimic what you are saying! Coincidentally, I had read Colleen’s post the other day. She reaffirmed all of this. After reading about folks using the Geiger counter, I asked about this and I was told, as Colleen had noted, that this can cause a lot more anxiety for folks who use them. Since my anxiety is already high, I will not be purchasing one,
I feel fortunate to have found this group and will reach out here, if and when, I need to hear from folks who knowledgeable and understanding!

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Thanks to all of the wonderful information I gained since my first post, I feel much more at ease as we begin the Pluvicto journey. I hesitate to post this, however, because it sounds so simple, but, I am in my “overthinking “ mode with this issue. At the risk of embarrassing here it is….. how did you handle the dishes during the 3 and 7 day periods. I know they have to be washed separately. Did you put them in the dishwasher after each use or accumulate them for a day and then wash them separately? I was thinking of buying paper products, but I am trying to eliminate BPA products, etc, which most of those have. Even without the BPA’s, there are other chemicals involved!
Any advice is appreciated.

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@lee1447

Thanks to all of the wonderful information I gained since my first post, I feel much more at ease as we begin the Pluvicto journey. I hesitate to post this, however, because it sounds so simple, but, I am in my “overthinking “ mode with this issue. At the risk of embarrassing here it is….. how did you handle the dishes during the 3 and 7 day periods. I know they have to be washed separately. Did you put them in the dishwasher after each use or accumulate them for a day and then wash them separately? I was thinking of buying paper products, but I am trying to eliminate BPA products, etc, which most of those have. Even without the BPA’s, there are other chemicals involved!
Any advice is appreciated.

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We took no precautions regarding dishes. None of the nuclear medicine or urology providers at Mayo ever mentioned dishes, nor do any of the instructions or materials we have received mention such precautions.

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