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Anyone on Pluvicto? Looking for a support team

Posted by eugenelapietra1 @eugenelapietra1, Dec 19, 2023

Looking for support team going through Pluvicto.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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michaelbryan6998 | @michaelbryan6998 | Mar 8, 2025
In reply to @melcanada "Cancer patients use them Put in mouth overnight and one sticks to side of gum and..." + (show)
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Cancer patients use them Put in mouth overnight and one sticks to side of gum and dissolves slowly all night Do not suck or chew Let them last all night

I also spray Biotene from I get at drug store or any Walmart I get big bottle and reload small spay bottles at bedside and in car

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Thanks. Helpful

Michael

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crwaz | @crwaz | Apr 2, 2025
In reply to @smc24 "I've been through Pluvicto and am in the process of repeating the treatments. The guidelines say..." + (show)
Profile picture for smc24 @smc24

I've been through Pluvicto and am in the process of repeating the treatments. The guidelines say stay 3 feet or more away for the first 3 days, for extended periods of time. My recommendation is to have him sit in the back on the passenger side, opposite the driver . Moisture, when exhaled will be radioactive (as is urine, sweat, etc). Keep the heater/air conditioning FAN on medium or higher. This will bring in the most outside air, maintaing positive pressure inside the car, which forces the air out through the louvers in the back (trunk). DO NOT use the recirculation setting. You want all fresh outside air. Depending on the weather, a partially open window would be helpful to get rid of the contaminated air.
While in the hospital, watch the medical staff. It's not as scary as you might think, but definitely follow the guidelines.

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@smc24 Inquiring if there’s any chance you are on Medicare & they approved another 6 repeating treatments

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smc24 | @smc24 | Apr 2, 2025

Sort of. I was one of the original Novartis Pharmaceutical clinical trial patients in 2021-22. Costs were paid by Novartis and the University of Chicago. When the cancer started to advance again, in early 2024, my medical team at Simon Cancer Center in Indianapolis applied to Medicare and my supplemental insurer, Aetna for coverage. They agreed. The view it as their first (and only) coverage. I have completed 4 of the repeat 6 treatments. In summary, Medicare will only cover Pluvicto for one round of the approved 6 treatments. My case is extremely unique.

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Pat | @pschoone | Feb 23 2:51am

My husband has had Prostate Cancer since 2012 and had several treatments but now his PSA is rising rapidly and the cancer has metastasized. I am trying to figure out how we are going to manage the distancing that is needed after the infusion. He is 83 years old and is blind and has a suprapubic catheter. He has just been blind for just four years and has learned to get around with someone guiding him. He has to have help with his shower (drying) and help with getting his clothes on. When I have to be gone - we have different caregivers come in and help him the same way I do. He is not a candidate for chemotherapy and had bad side effects from the chemo pills so the doctor says this is his only option. Has anyone else had this kind of situation. We go for a consultation with the center where it will be administered the first of March.

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Colleen Young, Connect Director | @colleenyoung | Mar 7 3:57pm
In reply to @pschoone "My husband has had Prostate Cancer since 2012 and had several treatments but now his PSA..." + (show)
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My husband has had Prostate Cancer since 2012 and had several treatments but now his PSA is rising rapidly and the cancer has metastasized. I am trying to figure out how we are going to manage the distancing that is needed after the infusion. He is 83 years old and is blind and has a suprapubic catheter. He has just been blind for just four years and has learned to get around with someone guiding him. He has to have help with his shower (drying) and help with getting his clothes on. When I have to be gone - we have different caregivers come in and help him the same way I do. He is not a candidate for chemotherapy and had bad side effects from the chemo pills so the doctor says this is his only option. Has anyone else had this kind of situation. We go for a consultation with the center where it will be administered the first of March.

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@pschoone. Hi Pat, I can imagine you're concerned about the instructions regarding keeping a distance of 3-6 feet for the first few days after treatment. What did they tell you at the consultation?

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Pat | @pschoone | Mar 7 9:06pm
In reply to @colleenyoung "@pschoone. Hi Pat, I can imagine you're concerned about the instructions regarding keeping a distance of..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@pschoone. Hi Pat, I can imagine you're concerned about the instructions regarding keeping a distance of 3-6 feet for the first few days after treatment. What did they tell you at the consultation?

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@colleenyoung We have just talked to our Cancer Doctor locally and our consultation is on the 17th of March. I did talk to the radiation department where he would have the procedure and they said it is very important to follow the 3-6 ft distance for the first 3 days.

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lfusilli | @lfusilli | Mar 15 12:10pm

I have had two injections of Pluvicto with my PSA at 20 and after the first shot, it went down to 1.1. I have just had my second shot three weeks ago and having some lower G.I. issues other than that dry mouth and tired.

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Pat | @pschoone | Mar 19 1:52pm
In reply to @colleenyoung "@pschoone. Hi Pat, I can imagine you're concerned about the instructions regarding keeping a distance of..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@pschoone. Hi Pat, I can imagine you're concerned about the instructions regarding keeping a distance of 3-6 feet for the first few days after treatment. What did they tell you at the consultation?

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My husband has decided to not get the infusion.

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emteenest2 | @emteenest2 | Mar 19 3:19pm
In reply to @bicio58 "Hi everybody, I started my Pluvicto therapy yesterday, I would like to exchange ideas, impressions, feelings..." + (show)
Profile picture for bicio58 @bicio58

Hi everybody, I started my Pluvicto therapy yesterday, I would like to exchange ideas, impressions, feelings etc. I know this is a newly developed treatment, so the body of information may not be extensive.
I am a 65 ( almost 66 ) old male, I was first diagnosed with prostate cancer in 2011, Underwent radical prostatectomy and everything seemed resolved. In 2019, the cancer appeared again, this time in my lymphnodes. Since then, I have been doing hormone therapy, at first with Lupron depot injections ( 22.5 mg. every 3 months ) and, starting in 2020, daily capsules of Erleada and Xstandy, plus Lupron. Since 2019 my PSA is been fluctuating from about .4 to .18, . In 2021, the cancer had spread to at least 2 locations in my bones, therefore , I have also done 3 separate sessions of radiation to resolve pain with mixed success. Started chemotherapy on May, 2023. Since the cancer stopped responding to hormone and chemo therapy about three months ago, my doctor recomended Pluvicto, which I started yesterday.
Side effects so far ( 36 hours into it ) : NAUSEA, LOSS OF APPETITE, INCREASED FATIGUE, STRONG MALAISE .
Although I try my best to mantain a positive attitude and not give in to my fears, I am in a situation that is very difficult : I have zero support, lost my wife in 2021 to Covid, and , having just moved to a different state just before, no friends or family. I would like to thank you all in advance for any exchange of ideas and impressions.

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@bicio58 i am sorry
To hear about the loss of your wife. I hope Pluvicto is a success for you. My husband just finished his 2nd shot of Pluvicto. He is having a PSMA pet on Tuesday. Tired, loss of appetite and some body aches. Keep fighting

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yougnu | @yougnu | Mar 24 12:14am
In reply to @colleenyoung "@eugenelapietra1, looks like you're building a good support team around Pluvicto experiences. My contribution will be..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@eugenelapietra1, looks like you're building a good support team around Pluvicto experiences. My contribution will be this link to a list of discussions related to Pluvicto in the Prostate Cancer support group:
https://connect.mayoclinic.org/search/discussions/
For those of you who are in treatment or have finished Pluvicto, what do you wish you had known? Tips?

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@colleenyoung
I did Pluvicto and only had to do two infusions last summer. 8 months later my PSA is still below 0.10. Wish it had been around years ago before I went through Chemotherapy, Immunotherapy, IMRT, Surgery and all the rest of the usual suspects. Best treatment profile I have run across.

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