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.

@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.

Jump to this post

@kenredman, I second @bicio58 questions. Did the side effects of nausea and fatigue ease with time? How long after treatment?

REPLY
@colleenyoung

@kenredman, I second @bicio58 questions. Did the side effects of nausea and fatigue ease with time? How long after treatment?

Jump to this post

I would say that the side effects were pretty much gone after the first week.

REPLY

Have had 3 doses. Definitely fatigue. Better after a week but persistent with mild nausea.
Big question is: Is it doing anything? Anyone with positive outcomes? Better scans and reduced PSA?
3 more doses to go.

REPLY

I too have experienced the mild annoying nausea for 10-14 days after my treatments even if I eat the mildest foods and experience fullness much quicker. I’ve had 3 doses myself with the 4th.dose scheduled for late January. They will do a PSMA scan the day before my treatment to see if it is working and whether to proceed or not. I also of course have the fatigue but I’ve always had that anytime I’ve been on Leuprolide.

REPLY
@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

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

REPLY
@kbrz

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.

Jump to this post

Forget about the past!! I get my 3rd shot on Jan.11 and have only Good Side Effects. If we're on Pluvicto its because we have no other option. So buckle up and enjoy the ride. Life is beautiful!!

REPLY
@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.

Jump to this post

I've had 2 Shots and all good side effects, feel much better than before. 3 rd shot Ja. 11

REPLY

Had my second Pluvicto shot a week ago and although my side effects were similar to my first one, they are now worsening a week later ( whereas I was feeling much better with my first one after one week ) most notably is a complete lack of appetite and severe malaise and fatigue. Admittedly, as I was describing on my previous post, my environmental and psychological factors could also be to blame for my general state of being. Doctor informed me that after my next ( 3rd) shot, he will run bone scan to see if there is any improvement. I am looking forward to that as well . Question: is there anybody on this blog that has completed the full course of Pluvicto ? Thanks and good luck to you all .

REPLY

My husband had his first Pluvicto infusion three weeks ago. By now, most of his side effects are gone. What follows is his side effect history. He had some nausea the first couple of days, but the sublingual medication Mayo prescribed made him constipated, which he hates, so he didn't take any more anti-nausea medication and took Miralax twice a day for a few days instead until the constipation eased. Luckily the nausea was mild and was gone within a few days. For a few days after the infusion, he had no appetite; by now he is hungry much of the time, but some foods don't taste quite right and others don't appeal to him at all, sohe is figuring out what to eat a day at a time. He still has some extra fatigue but has been out working in the yard a lot anyway. He has a bit of back pain after his yard work, so I am not sure if that is from the exertion or the spinal mets, but suspect it is the yard work because the pain eases when he comes inside and rests. Another note: he had his post-Pluvicto lab work (CBC and CMP) done locally yesterday. The lab faxed the results to the Kwon team at Mayo, who said his numbers are stable, meaning no worrisome effects from the first Pluvicto infusion. His second infusion is scheduled for February 28.

REPLY

My husband (age 65) was diagnosed with Stage 4 w/spread to lymph and bones throughout his body in early July 2023. ADT/Darolutamide/Chemo quickly failed to keep his PSA low and prevent spread; note he had to stop chemo after only one treatment. He started the Pluvicto in December 2023. The side effects for first treatment were mild nausea and heavy fatigue for about a week. For second treatment, nausea, fatigue and some dry mouth and loss of taste. These have been very manageable for him. The good news -- he feels markedly better in terms of back pain and mobility; his PSA numbers are going down; and the post-therapy monitoring scan after second treatment showed visual progress and no new lesions. He has his third therapy in early March and will receive a PET scan/bone scan to better check on whether the Pluvicto is really working. We are cautiously optimistic that this therapy will have a great impact for him, and very grateful that it exists as an option. Also very very grateful for the excellent care at Mayo Rochester.

REPLY
Please sign in or register to post a reply.