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.

You found a great place here notwithstanding your med team.
Post your diagnostic info and major decision concern and you should get some helpful replies.

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@grandpun

You found a great place here notwithstanding your med team.
Post your diagnostic info and major decision concern and you should get some helpful replies.

Jump to this post

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

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.

Jump to this post

Super important that you not loss weight, eat even when your not hungry.... and don't worry about eating healthy, just eat everything...I eat ice cream for breakfast ! Take Dramamine for nausea before you get nauseous......... imperative that you assemble support staff. you need somebody with you in your home most of the day,........for physical support as well as emotional support.......You need to do that now, today!!!! You are in uncharted waters and its going to be a bumpy ride. My first Pluvicto shot was fine , no problem. The second shot landed me in the hospital in unimaginable pain.......I've decided to accept the fatigue ( you can't do anything about it anyway) and stay in bed and enjoy my dreams........Staying positive is so important. Watch comedy shows and forget the news...Please lets stay in touch , we need each other...Gene

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@eugenelapietra1

Super important that you not loss weight, eat even when your not hungry.... and don't worry about eating healthy, just eat everything...I eat ice cream for breakfast ! Take Dramamine for nausea before you get nauseous......... imperative that you assemble support staff. you need somebody with you in your home most of the day,........for physical support as well as emotional support.......You need to do that now, today!!!! You are in uncharted waters and its going to be a bumpy ride. My first Pluvicto shot was fine , no problem. The second shot landed me in the hospital in unimaginable pain.......I've decided to accept the fatigue ( you can't do anything about it anyway) and stay in bed and enjoy my dreams........Staying positive is so important. Watch comedy shows and forget the news...Please lets stay in touch , we need each other...Gene

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Surgery 2016, radiation same year, HDT until failure Sept 2023, Chemo 4 sessions until failure, first Pluvicto 11/30/23 and second scheduled for 01/12/24.

Sorry to hear about you losing your wife, mine remains in my life, but can not deal with my disease. She has relocated and does visit often.

Chemo stopped and I feel better because of that so I have not noticed Pluvicto side effects. At least for now, Life has gotten better. I will stay on this site and report as more is known.

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I have started Pluvicto treatment a couple weeks ago. So far I’ve had some nausea and fatigue but would rate them as low. Other than that, not too many side effects.

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@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/?search=Pluvicto

For those of you who are in treatment or have finished Pluvicto, what do you wish you had known? Tips?

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@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.

Jump to this post

@bicio58, dealing with a recurrence is hard. Losing your wife unexpectedly is unimaginable and must be so hard as you continue with treatments without her support beside you. I just want to acknowledge that.

In addition to the discussions here by text at any time of day, there is also a monthly support group on Zoom led by a Mayo doctor. You might find it information to join in when you can and perhaps enjoy some comraderie. The group meets monthly on the 2nd Wednesday of the month from noon to 1:30 pm CT. The next one is Jan 10.

All welcome by the way. Here's more info:
https://connect.mayoclinic.org/event/prostate-cancer-support-group-100/

Bicio, I know it's only been a day, but have any of the side effects of Pluvicto eased for you today?

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@colleenyoung

@bicio58, dealing with a recurrence is hard. Losing your wife unexpectedly is unimaginable and must be so hard as you continue with treatments without her support beside you. I just want to acknowledge that.

In addition to the discussions here by text at any time of day, there is also a monthly support group on Zoom led by a Mayo doctor. You might find it information to join in when you can and perhaps enjoy some comraderie. The group meets monthly on the 2nd Wednesday of the month from noon to 1:30 pm CT. The next one is Jan 10.

All welcome by the way. Here's more info:
https://connect.mayoclinic.org/event/prostate-cancer-support-group-100/

Bicio, I know it's only been a day, but have any of the side effects of Pluvicto eased for you today?

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Thank you for your nice comment. Although I am not a fervent religious person, I confide in the phrase that says God won't load you with more than you can handle . The worst part for me is definetely the lack of support , isolation and solitude. As for my symptoms ....the second day after the treatment went surprisingly well, and today ( day 3 ) I feel poorly again...strage. Definetely lack of appetite, fatigue, a bit of mental fog.
Hopefully things will improve tomorrow. Thanks again .

REPLY
@eugenelapietra1

Super important that you not loss weight, eat even when your not hungry.... and don't worry about eating healthy, just eat everything...I eat ice cream for breakfast ! Take Dramamine for nausea before you get nauseous......... imperative that you assemble support staff. you need somebody with you in your home most of the day,........for physical support as well as emotional support.......You need to do that now, today!!!! You are in uncharted waters and its going to be a bumpy ride. My first Pluvicto shot was fine , no problem. The second shot landed me in the hospital in unimaginable pain.......I've decided to accept the fatigue ( you can't do anything about it anyway) and stay in bed and enjoy my dreams........Staying positive is so important. Watch comedy shows and forget the news...Please lets stay in touch , we need each other...Gene

Jump to this post

Thank you for your response and kind suggestions, weight is not a problem for me so far, probably due to the lenght of hormone treatment I went through ....( lack of testosterone ). I am sorry about you experiencing pain after your second treatment...Could you tell me more about it ? were you able to continue with your treatment ?

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@kenredman

I have started Pluvicto treatment a couple weeks ago. So far I’ve had some nausea and fatigue but would rate them as low. Other than that, not too many side effects.

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Good morning, couold you please tell me if the side effects eased after a few days or did you not have the at all ? Thanks.

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