Beginning Pluvicto

[Leigh1447]

My husband is having his first Pluvicto infusion in October. I am gathering as much information as possible so I can help him and, at the same time, try to keep my stress levels down!

I know he will have a low immune system because of the treatment, but I am wondering how we lead our lives between infusions if he is feeling ok and the lab tests are normal. We really isolated during the pandemic and I want to be realistic about how to have a “normal” life between infusions, knowing there are risks because of the low immune system.

Any responses are truly appreciated.

[RyderLake2]

Hello,

I just completed four infusions of Lutetium-177. Not Pluvicto but very close. PNT 2002 uses a different ligand to adhere to cancer cells. Virtually no side effects. No dry mouth, no nausea, no sickness, no vomiting, diarrhea, constipation, anemia, pain. Nothing! Just little fatigue and having to spend a week in the basement due to high radioactivity levels. My wife purchased a Geiger Counter. When I came home from the Agency it told me to get out of the house right away and contact the government! ☢️ 😆

[fishman357 in reply to RyderLake2]

Hello Sir, been following your journey for a while as a fellow CDN. Interested in how you have responded with L-177 as I believe you bypassed Docetaxel with this trial your on. I'm still responding well to ADT after 3+ years but as we all know the next turn can be at any time

Thank you for posting

[RyderLake2 in reply to fishman357]

Hello,

I appreciate your post. You are still in the early years of your journey. ADT drugs lasted five years for me. Four years on Zoladex and one year on Firmagon (degarelix) or as I like to joke "Firm Is Gone". 😊 Then my radiation oncologist moved me to a medical oncologist and he put me on an ARPI (androgen receptor pathway inhibitor) drug. In my case I chose Xtandi (enzalutamide) over Zytiga (abiraterone) and Prednisone. My medical oncologist also put me back on Zoladex, which I still take. That lasted another five years. Then came the clinical trial of Lutetium. I have yet to undergo chemotherapy. I have also been taking Prolia (denosumab) every six months since diagnosis. It is a bone strengthening drug. Good luck in your battle with the PCa beast. Stay positive.

[MJCA]

Hi. Not to sound flippant, I just don’t understand people worrying about something that hasn’t EVEN happened?? I have NO ONE watching out for me. I just take things as they come. Your husband will have to isolate himself from you for 3 days. Due to radioactivity, he should drive himself to and from treatments. All I experienced was a very dry mouth, certain foods tasting very salty and fatigue. Try to remain positive.

[Shams_Vjean in reply to MJCA]

Ever heard the adage “Once bit, twice shy”? It wasn’t my experience at Dx, but I know plenty who were affected that way; particularly some who also went through treatments and experienced unexpected complications or overall negative outcomes. Some can shake off such disappointments easily and not be wary of what’s to come; but others might also be wrestling with serious life events unrelated to cancer, which can make it more difficult to remember or believe that past events don’t necessarily change the odds for future outcomes.

I’m a big believer that perhaps the only thing I have any meaningful control over is my attitude; so I’ve made my personal mission to try and keep my attitude as positive as I can. And I’m ever grateful for being able to understand and act according to that perspective. I’m happy for you that you seem to have much the same outlook regarding your own situation.

But I also know there are others who are facing even greater challenges than being in the 3rd or 4th line of treatment for de novo high risk Stage 4 with widespread metastases. Easy to tell others to “just stay positive”. Maybe not as easy to understand and have empathy for how someone else’s life experience, aside from Dx and treatment, might be even more difficult than your own; and how that might affect their perspective regarding the unknowable future.

Wishing you all the best in your journey.

[j-o-h-n in reply to Shams_Vjean]

I think you meant, it's not rude to be a dude with a tude....

Good Luck, Good Health and Good Humor.

j-o-h-n

[MJCA in reply to Shams_Vjean]

Did you read my bio?

[Shams_Vjean in reply to MJCA]

You’ve been hanging tough over a long haul. Much congrats for keeping on keeping on and not feeling sorry for yourself!

Wishing you all the best for the time you yet have left.

[MJCA in reply to Shams_Vjean]

Thank you. I hope I have quite a bit more time left, there are so many places I still want to see!

[Shams_Vjean in reply to MJCA]

Hope you get to visit them all!

[God_Loves_Me]

Try to get CT and PSMA Pet CT Scan before infusion and also do same same after 2nd infusion to compare the results.

[tn12]

Please fill out your bio.

[dk73]

while doing pluvicto, my husband felt great! He followed isolation guidelines but once done, we enjoyed life. Took a week vacation with our kids/grandsons. Ate out, thrift shopped, enjoyed the every 6 week timeframe instead of 3 week with chemo. But sadly it caused more harm than good. Stopped after 4: back to chemo every 21 days. We are in our 8th year of treatments and it’s starting to really take its toll on him (age 71)

[Lakehouse07]

Hi....like dk73 my husband felt great after treatments .. a little more fatigued that day and a couple of days after....we did the "isolation" from each other ie seperate beds and separate bathrooms for the 3 days....hardest part for him was being isolated from young grands for 7 days (we wanted to be very careful) but other than that for my husband easier than chemo....however stopped working after 4th and 5th treatment with increased bone Mets and PSA so did not finish 6th treatment....my husband elected not to do chemo again ...he is 79 almost 80 and has been fighting prostate cancer for 17+ years (diagnosed in 3/2007 and total prostatectomy 8/2007)....he has fought the good fight and is tired...He started Hospice care at home yesterday ....Pluvicto gave us almost 9 good months that we may not have had....good luck to you and your husband

[Fighting4u in reply to Lakehouse07]

Blessings to you both....

[Leigh1447 in reply to Lakehouse07]

Thank you for taking the time to share your experience during this difficult time. I am sorry to hear this treatment did not turn out better. But I am sure your and your family feel fortunate to have had an additional 9 months. May the Hospice care provide the support and care you deserve.

[Fighting4u]

The best advice I can give to you is to INSIST on a scan if your husband's PSA starts to increase. My husband's PSA started to increase after the 3rd injection at an alarming rate and the RO & MO both continued to say we did not need to do any scans, it was probably debris from the dying cells and to continue with the 6 treatments. We believed them and after receiving his end of treatment scan results 2 weeks ago, we were told to put his affairs in order as he has 6 months to live. We lost valuable time that allowed his cancer to spread like wildfire by not stopping the Pluvicto after the 3rd injection because it was not working at all. Sending good wishes for a successful therapy and blessings to you both.

[Leigh1447 in reply to Fighting4u]

I am so sorry to hear about your husband. We were told that initially an increase in PSA may occur. I have added this to the list to talk to the oncologist about.

Blessings to you and your family.

[Miccoman]

I had all six infusions of Pluvicto and had virtually no side effects. The 3 days of isolation were not a big deal. BUT, after a consult with an MO at Memorial Sloan Kettering, I got a week course of steroids with the injections to combat any "rebound pain" due to the amount of mets in my body.

PSA was 99 at start, last August (2023), am now 5.7 and very slowly rising. Hoping to get to do a second course, probably next year. I'll have to work that out with my MO. Oncology is very attentive to me now and bend over backwards to keep me happy -- not sure how much the $103,000+ per injection has to do with it, but I'm enjoying the much better treatment than when I was on Docetaxel.

[Leigh1447]

I was glad to read about your experIence with Pluvicto. It was good to hear how much your PSA decreased . It is always good to know that there is another approach you can be thinking about if needed. Do you remember what genetic testing you had prior to starting Pluvicto ?

[j-o-h-n]

Greetings Leigh1447,

Would you please be kind enough to update your dear Husband's bio. All information is voluntary but it helps him/you and helps us too. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Leigh1447 in reply to j-o-h-n]

I was going to do the profile when I signed up this week, but was not sure how much detail to add. After receiving your request, I looked at your very detailed profile. What a good job you did to provide that. I will update the profile when I have dates, procedures, medications, etc in front on me My husband is 75 years old and was diagnosed in 2003. You can imagine how his profile will look.

[j-o-h-n]

Thank you,

My suggestion would be just bullet points.....unless there's a particular one which you want to include in more detail. You're come to the right place for Info and comradery and if I made it to 87 he definitely can. Save now for his surprise 85th Birthday party (I'm partial to whipped and not butter cream - hint hint)

Good Luck, Good Health and Good Humor.

j-o-h-n