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Anyone on Pluvicto? Looking for a support team
Prostate Cancer | Last Active: Apr 4 4:34pm | Replies (42)Comment receiving replies
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.
Replies to "Hi everybody, I started my Pluvicto therapy yesterday, I would like to exchange ideas, impressions, feelings..."
@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?
Take Dramamine every morning before you get nausea. Eat junk food ( I have Desserts for breakfast ) you must gain weight per doctors orders. treat the fatigue as nap times and rest ,theres nothing you can do about fatigue.I get my 3rd shot on Jan.11 and have experienced good side affects . Overall feel better than before. All other drugs stopped working after 22 years. This is my Hail Mary. I feel good. You have nothing to lose!! Continue to reach out for support, volunteer to come to your house for a couple of hours a day. Eat your lunch in public park. Church? Stay connected to the outside world! You must step up your effort to create a support group. Text me any time!Gene
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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