First Pluvicto Infusion Soon

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.

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.

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

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.

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.

My wife Becky and I are in about the same place that Lee and her husband were when she made her first post in September. I showed it to Becky and she said "That sounds like me". I was diagnosed with stage 4 prostate five years ago, I have had radiation treatment and chemo, and now I have been advised to go with Pluvicto. On Jan 7 I will see the Pluvicto guy to discuss it. Lee's post and the responses are very helpful. I was unaware of the need for genetic testing, I suppose it will be part of the Jan 7 discussion.

I am hoping to get a better understanding of the danger I will pose to others once I start radiating. For example, if it is safe to have a five minute conversation with me if I stay three feet away, that does not mean it is safe to be a few feet, say three, six or ten, feet from Becky day in and day out through the 36 weeks of treatment. Ok, I stay away for a few days right after the infusion but that still leaves many days of being sorta close. Becky and I belong to a book club that meets for an hour every month. I am not comfortable deciding that I am safe for others at the table just because someone said so. I guess I am looking for some data, and some background info to understand the data. The danger to others is a function of how much I radiate, how close the others are, how long they stay close, and what shielding I could using. Living together is different from a brief casual encounter. As Becky and I see it, a geiger counter might be useful. But basically we seek explicit information. about the danger I will pose.

Thanks, Lee, for your post.

Ken and Becky, I think I know what you are going through. I sure learned a lot from this group. In addition to that, there is a wonderful nurse in the infusion clinic who is always available to answer any questions. My husband had his first infusion October 3 and scans October 4 and the 7th. I did not go with him to the infusion, but chose to drive with him for the scans. I was so worried about being in the car with him, but the nurse and radiation oncologists “assured “ me that if I was 3 feet away and my drive was only about 30 minutes it would be fine. I am sure many folks would disagree with that, but I did it and I am glad I did. It seemed to help with the anxiety I was having. I have to admit, though, as silly as it sounds, I did not walk next to him in the hospital and we took separate elevators! Crazy, huh?

I read the Pluvicto guidelines from various top centers and most of them referenced the 3 and 7 day guidelines. I was anxious because of what the men who used the geiger counters were saying. However, after reading the post from Colleen, one of the moderators here, I knew that if we used one, it would add more to my anxiety, which I did not need. I read a post from a man who documented what he found with the radiation levels by using the geiger counters. He said after the second week his radiation was very minimal. Based on that, we extend the 3 day rule to 7 days. My husband has his “man cave” and keeps himself busy. The next 7 days we are together. If we are watching TV, etc, we are 3 feet apart and we use separate bathrooms and bedrooms. I know this is beyond what is needed but that is the approach that I am most comfortable with. After the second week, everything is back to normal. We try to enjoy the next 4 weeks before we start this all over! I will say, the infusion nurse told me the way we handle it is not necessary. It is what we are comfortable with, though.

My husband will have his third infusion the day after Christmas. So far all is going well. We appreciate the good results he has had so far, but we know results might change from infusion to infusion. His main side effect is some fatigue, but he is still on Zytiga which doesn’t help that.

I hope this helped a bit. Feel free to send me a personal message if you think of anything you would like to ask me.

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