Does Pluvicto work? What's the prognosis?

Posted by cal77 @cal77, Mar 6 10:03am

Hi,

Docetaxel doesn't seem to be working..My husband's PSA is up now to 500!! He's had 2 treatments of Docetaxel so far, but they are only giving him 1/3 dose, because he had a tumor removed at his spinal cord at T4 in November and is trying to get mobile now.

So, does Pluvicto work? Is it as good as Docetaxel? What is the prognosis with Pluvicto? This is all so scary.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for lag @lag

@deccakid Please, please do NOT worry about people you have brief and incidental contact with after your infusions, such as neighbors, store cashiers, drivers, etc. As for your daughter, just prevent her from contacting your bodily fluids for three days after your infusions (assuming she isn't pregnant) and don't worry about being around her otherwise. We were in a hotel in Rochester and its breakfast room, and all over Mayo Clinic buildings and in local restaurants, and were told such casual contact could not endanger anyone else.

My husband was first diagnosed in 2005, had local radiation treatments, had his first recurrence in 2011, complete with metastases, and became a Mayo Rochester patient of Dr. Kwon and his colleagues the same year. He has had most of the treatments available for Stage 4 prostate cancer, including Lupron, Zytiga, docetaxel chemotherapy, many instances of SBRT and other radiation and ablation of spinal metastases, and Pluvicto. The treatment protocol is jokingly called "whack a mole" by his providers, but by going after each recurrence and its metastases as soon as they pop up, his doctors have kept him alive for 21 years now with a pretty good quality of life. Pluvicto was not very successful for my husband, and we haven't yet tried infusions with the alpha particle Actinium, though we are interested in a clinical trial of that treatment. The moral of the story is to keep on top of your cancer with good doctors, knock it back when it pops up, and hang around long enough for new treatments to become available. Good luck on your Pluvicto journey, and may you be one of the men for whom it is very effective.

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@lag
Thanks for sharing your story - it gives me hope 💗. My husband is at the beginning of his journey and he is coping exceptionally well with PC diagnosis, while I am having really hard time dealing with all scary statistics and uncertainty. Reading about success stories on this forum is about the only thing that helps me cope with it all.

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Profile picture for lag @lag

@jeffmarc thanks, Jeff. I did know it is available now in Austria and probably other places, but we aren't ready to make that jump yet. Having PSMA PET and labs at Mayo in early May, and will get the advice of the Kwon team there and my husband's local medical oncologist about next steps based on those results. There is a clinical trial of Actinium open now which is being supervised by that same oncologist which would only be about an hour from home, and it is in the mix of possible next steps.

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@lag
Dr. Kwon is a urologist. Get an appointment with Dr. Heath. She is a GU oncologist and is really great to work with. She is the head of the department. You should look for a doctor that matches what you need, that’s not a urologist.

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Profile picture for surftohealth88 @surftohealth88

@lag
Thanks for sharing your story - it gives me hope 💗. My husband is at the beginning of his journey and he is coping exceptionally well with PC diagnosis, while I am having really hard time dealing with all scary statistics and uncertainty. Reading about success stories on this forum is about the only thing that helps me cope with it all.

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@surftohealth88
I feel for you. I don't share my plight with many for that exact reason. My journey started with stage 3 and now progressed to stage 4 metastatic castration resistant and have been fortunate to have handled each treatment phase remarkably well, physically, mentally and spiritually.
However, I do think it's harder on the loved ones. Keep your hope, your love and your faith in God. Cancer may be debilitating at times, but it can't take away those precious things.
Blessings

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Profile picture for Jeff Marchi @jeffmarc

@lag
Dr. Kwon is a urologist. Get an appointment with Dr. Heath. She is a GU oncologist and is really great to work with. She is the head of the department. You should look for a doctor that matches what you need, that’s not a urologist.

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@jeffmarc I agree that seeing Dr. Heath would be a good idea, but my husband doesn't see the need. He has a genitourinary oncologist locally who is great, and he has been under Dr. Kwon's care since 2011 and is comfortable with him directing his care at Mayo. I have Dr. Heath in my mental notes just in case.

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Profile picture for deccakid @deccakid

Thanks, and "Nahhh"...I take everything in stride...No need for excessive concerns (NOT worries) except those first 3-5 days. My legitimate concern is for those around me. I am single and have gone through these entire procedures by myself...No biggie, I'm used to it...But I speak out of respect for those that HAVE to be around me...Drivers, store attendants, should I have chosen to shop,...neighbors, my teenage daughter, etc...I mean, why take any chances??
I read everything with a grain of salt and a humorous (yes, I know this is serious stuff, but that's how I keep my sanity!!) outlook...And, since this is my first rodeo with Pluvicto, I'm ever more watchful...
I thank you for your input...how is your husband now, 2 years after?

Blessings

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@deccakid , you do need humor. I dressed for Halloween as a Pluvicto glow worm.

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Profile picture for pwitkin @pwitkin

@deccakid , you do need humor. I dressed for Halloween as a Pluvicto glow worm.

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@pwitkin
Hah!! That's a good one!! ...probably difficult to explain to an outsider but I get ya! I've already joked with the Doc..."Am I gonna glow in the dark"?...
It'd probably be good for power outages??!!
LOL

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Profile picture for cal77 @cal77

@northoftheborder

Saw the radiation safety officer yesterday, along with Radiation Dr. and nurses...When I asked how long pluvicto would extend life vs. chemo, he said 4 months! Really?? I don't get it and I don't understand where they get this info from.

Also, regarding safety of Pluvicto. As the spouse, they said my husband could sit in the back seat and we could drive the 20 min. home and that would be find. But, we're not 6 feet apart. I asked if he could take a Taxi Van so he is further away in the back seat, and they said that wasn't allowed because he's not allowed to be in the public where they don't have consent. Also, someone has to wheelchair my husband out to the main door of the hospital and that's another 10 minutes at least. Then we have to go back the next day for another trip to the hospital for a scan, so another 20 minutes back and forth and also close contact with the wheeling of the wheelchair. This all makes me very worried.
Then, we sleep in separate rooms with a wall between us, but only one foot between the end of this feet to the bedroom wall, and then my head is right there on the other side of the wall.
I think I should just stay in a hotel for 2 nights as we don't have a separate bathrooms and my husband has to pee in urinals...so lots of potential for splashing and spilling...OMG ...this all sounds so horrible...
What do other people do? Do they stay in hotels...? or maybe they have larger houses and separate bathrooms and maybe their husbands drive?

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@cal77
I'll chime in again, although I think I did re: a similar post.
It's not so much the physical proximity, it's the bodily fluids. I don't see how sleeping in 2 beds, no matter how close they are together...it's most likely the possibility of overnight sweating. The same for any of the bodily fluids...Sure, I am concerned about anyone around me and chose to hibernate for 3-5 days...One could say that's too much, but I think about...shopping?...sure, I can be 6 feet away, but what I touch the cashier touches, monies exchanged, handling food you may put back on the shelf, a cough in the wrong direction, etc.
Use common sense, but I think you might be too fearful of it...in the car, just have your husband wear a mask, be fully clothed and wear nitrile gloves...When he pees, just don't miss...and flush twice. Hospitals know the parameters, they'll deal with the ancillary equipment.
You'll be fine!! Keep us informed!
Blessings

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Profile picture for deccakid @deccakid

Thank you all for your input. I read and digest everything, but go by my own research and my oncologist. Sure, probably not a problem if careful, but I take no chances. I've always acted on the side of caution without being "worried" about it...ultimately, it's common sense...

And yes, I think I previously posted a quote from a prominent Oncologist...(to paraphrase)...'we do what works until it stops working, then we move on to something until it stops working'...ad nauseam (excuse the expression). "One man's meat is another man's poison..."
I'll check back in 3 months after a scan and let y'all know if I'm one of the lucky ones..........
Blessings to all.

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@deccakid wrote ❝I previously posted a quote from a prominent Oncologist...(to paraphrase)...'we do what works until it stops working, then we move on to something until it stops working'.❞

Interestingly, that strategy is in flux these days, at least for metastatic prostate cancer.

Instead of the traditional sequential treatment escalation (one treatment until it stops working, then the next, and so on…) a growing number of major trials are suggesting that you're better hitting metastatic prostate cancer with everything you've got up front. That's the basic philosophy behind doublet and triplet therapy for example.

Obviously, that doesn't apply to all types of treatment, and not all oncologists have bought into such a drastic shift, but it's moved from bleeding-edge when my treatment started in 2021 to borderline mainstream now, which is an extraordinarily fast change (and why the SEER data about our survival prospects is suddenly badly out of date).

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Profile picture for northoftheborder @northoftheborder

@deccakid wrote ❝I previously posted a quote from a prominent Oncologist...(to paraphrase)...'we do what works until it stops working, then we move on to something until it stops working'.❞

Interestingly, that strategy is in flux these days, at least for metastatic prostate cancer.

Instead of the traditional sequential treatment escalation (one treatment until it stops working, then the next, and so on…) a growing number of major trials are suggesting that you're better hitting metastatic prostate cancer with everything you've got up front. That's the basic philosophy behind doublet and triplet therapy for example.

Obviously, that doesn't apply to all types of treatment, and not all oncologists have bought into such a drastic shift, but it's moved from bleeding-edge when my treatment started in 2021 to borderline mainstream now, which is an extraordinarily fast change (and why the SEER data about our survival prospects is suddenly badly out of date).

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@northoftheborder
I agree wholeheartedly. Times have changed, so it seems, and relatively quickly! It's a good thing...e.g. if you look up the traditional ADT, you'll find that Eligard, Firmagon and the like, whether Agonist or Antagonist have been used since...??? the mid 80's???

I'm in a small city (NO names!!), apparently behind the times...I have to travel to have Pluvicto administered....I'm sure some of the recent (modern) treatments are likely more efficacious...but not a lot of clinical data...yet...
Face it, we're all 'guinea pigs' in a way...I, for one, hope the results may help others in the future...
Blessings

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Profile picture for deccakid @deccakid

@cal77
I'll chime in again, although I think I did re: a similar post.
It's not so much the physical proximity, it's the bodily fluids. I don't see how sleeping in 2 beds, no matter how close they are together...it's most likely the possibility of overnight sweating. The same for any of the bodily fluids...Sure, I am concerned about anyone around me and chose to hibernate for 3-5 days...One could say that's too much, but I think about...shopping?...sure, I can be 6 feet away, but what I touch the cashier touches, monies exchanged, handling food you may put back on the shelf, a cough in the wrong direction, etc.
Use common sense, but I think you might be too fearful of it...in the car, just have your husband wear a mask, be fully clothed and wear nitrile gloves...When he pees, just don't miss...and flush twice. Hospitals know the parameters, they'll deal with the ancillary equipment.
You'll be fine!! Keep us informed!
Blessings

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@deccakid

Thanks...They told us we should have separate dishes, or rather paper plates and separate utensils. My husband can't urinate sitting or standing and so he lies down and it goes into urinals. These have to be washed out and dumped into the toilet. Lots of potential for drops and spills. Then he wears Depends which he changed at least twice a day and these , I was told should be placed into double garbage bags, and then his clothes if they get spilled on by urine or he sweats, then put them in a bag for 7 days, and then wash in the washing machine separately and wash twice... OMG is all l can say. This is unreal.

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