Pluvicto and PSA : My husband’s first... - Advanced Prostate...

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Pluvicto and PSA

leebeth profile image
33 Replies

My husband’s first dose of Pluvicto was 8/11/22. His PSA at that time was 2.29. His scans were 3/3 PSMA expression score, with more disease than just a month earlier PSMA scan.

His second dose was 9/27.

His PSA has been steadily climbing and today it is 6.13.

He feels great. The best he has felt in a long time.

His next PSMA scan is Nov 8, and I understand that will give us a better picture.

Nonetheless, we are scared.

It has been since June since he received chemo, and chemo has been the only intervention that has brought his PSA down. Without Pluvicto, his PSA would likely be much higher.

Did those of you who have experienced Pluvicto have an immediate and sustained PSA response?

Waiting for these scans is going to be challenging.

Thank you in advance for any insight.

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leebeth profile image
leebeth
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33 Replies
Rondief profile image
Rondief

Hi leebeth, I received my first Pluvicto treatment in July, I just had my 3rd treatment on Oct 4th.

Is he taking any other meds in combination to the Pluvicto?

My PSA was 3.4 prior to the first treatment and has declined to 0.6 BUT I am also taking Xtandi 3x40mg and Lupron. I believe there is a synergistic effect with Xtandi and Pluvicto and that might explain my rapid decline.

I know there are other on this board more knowledge than myself. Hopefully they have some insight into this also.

Ron

meowlicious99 profile image
meowlicious99 in reply to Rondief

Rondief are you mcrpc ?

Rondief profile image
Rondief in reply to meowlicious99

yep

leebeth profile image
leebeth in reply to Rondief

Yes, he began Xtandi in late July, in hopes it would enhance PSMA expression even further, to get the most efficacy possible. So if anything, we would have expected it to be lower. His testosterone is <7; he is on Orgovyx.

noahware profile image
noahware

I will be getting my fifth Pluvicto infusion tomorrow. My PSA dropped after the first infusion, but then rose after the next few and is more or less stable over the past few months (around 30). My ALP rose at first, but then dropped and stabilized (in upper 200s, but was once over 1000).

My scans over recent months reveal some areas of mets improving, but some new spots of uptake as well. Even so, the docs assure me my disease "is more or less stable" since I remain (mostly*) free of symptoms and there are no dramatic changes for the worse showing in the CT or bone scans.

I am not convinced this therapy is working. On the other hand, how much worse might I be if not doing the Pluvicto?? So, have decided to let it play out. I feel if I wanted the most expert opinion possible on my actual status as regards Pluvicto, I would need to consult a top doc in Austria, Germany, Australia or India who has many years of experience with this therapy and the insights that come with dealing with dozens or hundreds of Lu-177 patients. That wealth of experience is not yet available to us in the US.

If your husband truly is feeling the best he has felt in a long time, I would let that be your guide for now and do not sweat the lab results. Absent some terrible news from scans, take advantage of these "times of feeling good" as fully as you both possibly can! (They are gifts that we can't afford to squander, and pain-free moments should not be spent wringing one's hands about the painful moments that eventually may come.)

Remember, the goal is to treat cancer, not PSA. Sometimes PSA will rise or "flare" even as the treatment IS working to slow progression. Do not let a PSA rise convince you of what may not be true! If you don't know for sure that a bump in PSA is bad news or not, it might be better that you didn't even ask to see the number at all.

And even though it is about BAT and not Pluvicto, this text I recently posted might translate in part to what is still unknown about the meaning of PSA or scans during a few courses of Pluvicto:

"BAT can induce an initial flare response on the bone scan, as do many other effective prostate cancer therapies. Spots on the bone scan can appear darker, and sometimes new spots that weren't seen before can appear. Patients who appear to be benefitting but show an initial worse bone scan can be continued with repeat bone scan in 2-3 months."

* [A scan tomorrow will hopefully reveal if my recent lower back pain is related to mets or more likely to a herniated (?) disc that I injured at work and is not a result of PC progression. If the pain turns out to be PC-related, yes, THEN I will consider my Pluvicto to be failing.]

leebeth profile image
leebeth in reply to noahware

Thank you for your thoughtful, and helpful response.

I am trying hard to keep him positive! Past experience has shown us that a 4 month break from chemo resulted in a much more dramatic rise in PSA than this. His ALP has been WNL since March, two months into his most recent chemo cocktail. So, that remaining stable is encouraging.

We are doing the best we can to enjoy every day! Sadly, I started chemo right before Labor Day and have not tolerated it nearly as well as he did. So my health has put the brakes on some of our fun. I will be fine after treatment, though, with an excellent prognosis, unlike his extremely aggressive cancer. He is so active and healthy appearing and pain free! We have to just keep remembering that.

I hope you get great news with your scan.

noahware profile image
noahware in reply to leebeth

Thanks, best of luck to you both.

Ramp7 profile image
Ramp7

Just completed my 6th infusion 5 weeks ago. After the 2nd infusion my PSA went from 8.1 to 0.19. By the 6th infusion my PSA was 0.5. Preexisting cancer was stable. A new small hot spot identified with scans on tail bone. Scheduled for radiation. MO expecting for that to be cleared up.

leebeth profile image
leebeth in reply to Ramp7

You had a great response! Hopefully zapping that small spot will do the job.

I am hoping my husband still gets a decent response. In spite of all the chemo, he had a lot of bony metastasis and a few spots on his liver as he began Pluvicto. It’s hard to believe he has so much cancer as he feels so good.

Best of luck to you that you continue with your good response for a long time.

Muffin2019 profile image
Muffin2019 in reply to Ramp7

What treatment follows this to keep PSA undetectable and cancer in check ?

Ramp7 profile image
Ramp7 in reply to Muffin2019

I have an appointment with Dr. Denmeade at John Hopkins. He's one of the pioneers for BAT therapy. LuPSMA177 was partially effective with me. But PSA is now going up. urotoday.com/video-lectures...

Ramp7 profile image
Ramp7

Hoping the same for you 🙏

MateoBeach profile image
MateoBeach

increased PSMAintensities (SUMax) might reflect that the Xtandi is indeed doing its job. And PSA fluctuations and flares through early cycles of treatment do not indicate failure. Only more time and follow up PSMA scans will tell

If it is failing you may want to apply for the trial at Weill Cornell using 225 Ac-J591. Looks VERY promising and not available anywhere else. Otherwise can get combination of Lu and Ac PSMA radioligands in Germany or in Australia. Paul / MB

jcto.weill.cornell.edu/open...

leebeth profile image
leebeth in reply to MateoBeach

Thank you SO much for the encouragement. I hope the scan on Nov 8 will tell us more!

We would be willing to travel to NYC. We travel now, 5 hour drive. So but much difference really!

leebeth profile image
leebeth in reply to MateoBeach

I am happy to report that his PSA from yesterday came back as undetectable, <0.1. Third Pluvicto treatment today. We really never thought we would see his PSA so low.

MateoBeach profile image
MateoBeach in reply to leebeth

That, my dear ones, is just so awesomely wonderful news. I am dancing on clouds with joyful celebration today. I belief it means more time. More life. ❤️❤️❤️

leebeth profile image
leebeth in reply to MateoBeach

it was indeed incredible news until e got the results of the PSMA scan. His liver mets have increased, yet are intensely PSMA avid. Many bony lesions are improved, although one is worse. Seems strange in light of PSA but maybe the scan results lag. In a few weeks, he will have MRI and choline PET.

We are still cautiously happy. Thanks for the support.

Muffin2019 profile image
Muffin2019 in reply to leebeth

What treatment after pluvicto ?

leebeth profile image
leebeth in reply to Muffin2019

This post was from two months ago. He had his fourth, and final, Pluvicto last week. #5 & #6 were canceled as it is just not keeping up with his cancer. “Mixed response”. All his lesions are intensely PSMA avid, so the Lu-177 is simply overwhelmed by the quantity.

We were told his “runway is too short” to wait to see if he is approved for the trial of Ac225 with Dr Tagawa at Well-Cornell, so he is traveling to Turkey in a few weeks to receive Ac225 there.

Muffin2019 profile image
Muffin2019 in reply to leebeth

I hope it works, I follow his progress and pray for his finding the treatment that will extend his time.

leebeth profile image
leebeth in reply to Muffin2019

Thank you so much. We are hopeful. ❤️

NickJoy profile image
NickJoy in reply to leebeth

Best of luck to you both.

swwags profile image
swwags in reply to leebeth

I hope he finds success.

Hi leebeth - Getting ready for the 2nd pluvicto treatment. PSA bump 84 to 90. PSMA scan ordered 11/21. MO says not to worry????

leebeth profile image
leebeth in reply to NotAlwaysSunshine

My husband’s jumped as well; even as late as 3 weeks after 2nd. By 3rd, it was non detectable. Of course we are afraid it was lab error!

leebeth profile image
leebeth

percentage wise, that’s a small increase in PSA. My husband’s interval PSA, 3 weeks after second, was what concerned us a bit as we had expected it would be going down, not up. Since he is feeling fantastic, we have decided not to worry until after scan Nov 8.

So I agree, let’s not worry until after November scans! Good luck.

Whwalker1944 profile image
Whwalker1944

I had my prostate removed in 1999. During the next 21 years PSA was under control with radiation,Lupron, Casodex and Trelstar. In 2021 PSA rose to 25 and started Zytiga. One month later PSA went up to 126.I opted for Chemo(Taxotere) and PSA went down to 26.After 6 months of transfusions my PSA went back up to 126 and started Lynparza which had no effect. Started Lu-177 in 2021 and after 5 infusions PSA went up to 660 and Lu-177 was stopped. Started with Erleada in September 2021 and after 30 days my PSA went down to 308.I will see my MO in two weeks to determine why Erleada is effective.

I have had numerous scans which show main Mets in the liver but no significant change in 2 years.

This is all very confusing. I am considering stopping all treatment because of being very tired and no appetite. I have lost 60 pounds or 35% of body weight in last 3 years.

Any thoughts?

leebeth profile image
leebeth in reply to Whwalker1944

I am not an expert, but have you had any testing done such as Guardant 360? My husband’s doctor checks that after each new treatment change (such as after chemo) and now after every 2nd Pluvicto.

That will give him an idea of tumor mutations and actionable changes.

In my opinion, stopping treatment would most likely result in increased pain. I am sure others are more knowledgeable.

It sounds like you had a good response to Taxotere. Perhaps Jevtana would be a good choice? My husband had a good response to that mixed with carboplatin. However, you mention transfusions. Was your Hgb low?

mikell profile image
mikell

Leebeth,

I am still doing the Pluvicto treatment, having had 4 of 6. When I started, my PSA was only displayed as over some number near 1200. It did appear I needed Pluvicto rather badly. A week after, a blood test showed my PSA to be a bit over 4000. I reacted badly to the first infusion with weakness and pain, in my hips and left femur & kneecap and collapsed trying to walk on the first day after and was hospitalized. This involved a 7 day stay and a transfer to a rehab facility. That period was quite difficult. Over the period of 4 treatments, my PSA dropped steadily into the teens. Because some of my CBC bloodtest numbers were dangerously bad, my Pluvicto dosage was reduced for the 3rd and 4th treatments. Unfortunately, possibly even due to my dosage reductions, my PSA reading went from 10 to 15, last blood test. I have been through Xgeva and 2 other chemos, for my PCA, and have seen this pattern before. I am currently at PSA = 15 but would not be surprised if it continued to trend upward, like every other PCA treatment. Not at all sure how to approach that situation but, other than the treatment, I would guess mine is quite different than your husbands. I wish you both well.

mikell profile image
mikell in reply to mikell

Oops, I meant Xofigo, not Xgeva.

leebeth profile image
leebeth in reply to mikell

It looks like you have had a tremendous response based on your PSA. What are your scans showing?

My husband ended up having a mixed response to Pluvicto in spite of his lesions being intensely PSMA avid. After 4, he was told he was finished and needs something stronger. Even so, he is clinically improved after each dose. Prior to last week’s final dose, he was extremely fatigued and running nightly fevers of 103+. The first two nights after treatment, his temp was only 101, and now it’s completely normal. His appetite has returned and energy restored. I think the 6 week interval is just too long for him, but that’s the frequency that was studied.

In a few weeks he will receive Ac225 in Turkey. We are full of hope.

His counts have not been affected at all by the Pluvicto. I am sorry yours are, but clearly it is working!

On Dec 13, my husband’s PSA was 64. On Dec 20, same lab, it was 109. Clearly very active cancer.

mikell profile image
mikell

I just had my 5th Pluvicto treatment today, after skipping one to give my CBC blood tests a chance to rebound. I started treatment at about 4000 PSA and had dropped as low as 18 or so but it might be on a slow rise again. I know non-PSMA PCA might raise it's head and require other non-Pluvicto treatment, but my last PSMA PET scan still seemed to show PSMA, so I'm hoping the Pluvicto might have more to accomplish. I was first diagnosed in 2016 but don't know where I'll be a year from now. I do believe the Pluvicto treatment has likely saved my life, thus far. At any rate, good luck to you and your husband.

robert570 profile image
robert570

Before my 1st dose of pluvicto my PSA was 1.95 Before the 2nd dose it was 2.60 I just had my blood drawn and it now stands at 3.85, in another week I'm to receive my 3rd. I'm getting scans 2 days before that next dose. I will have some answers I will share once I talk to my oncologist. It will be 10 years at Stage 4 this fall.

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