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 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
Just want to say kudos to you for caring about others and taking precautions. I would be the same way. < 3

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Profile picture for Jeff Marchi @jeffmarc

@brbriggs
Actually, they zapped them with SBRT radiation. It is quite different from x-rays Which aren’t used for metastasis treatment?

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@jeffmarc We may be splitting hairs, but Minneapolis Radiation Oncology's website calls it External Beam Radiotherapy (EBRT) and it ulitizes a linear accelerator to direct high-energy radiation at precise areas to destroy prostate cancer cells. For me this is happening outside of the prostate like in my bones and lymph nodes.

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Profile picture for surftohealth88 @surftohealth88

@deccakid
Just want to say kudos to you for caring about others and taking precautions. I would be the same way. < 3

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@surftohealth88
Thanks, That's just my nature...respect and ...common sense. ..I remember at times when undergoing Chemo (Taxotere), some of the techs actually wore what looked like full-blown 'hazmat suits', should even a drop get on them...
It's always prudent to be on the safe side...
Blessings

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Profile picture for brbriggs @brbriggs

@jeffmarc We may be splitting hairs, but Minneapolis Radiation Oncology's website calls it External Beam Radiotherapy (EBRT) and it ulitizes a linear accelerator to direct high-energy radiation at precise areas to destroy prostate cancer cells. For me this is happening outside of the prostate like in my bones and lymph nodes.

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@brbriggs
And then there is this

External Beam Radiation Therapy (EBRT) differs significantly from diagnostic X-ray treatment, primarily in dose and purpose. While both use photon beams from similar-looking machines, EBRT uses much higher-energy radiation to destroy cancer cells. EBRT is a localized cancer treatment, often delivered in fractions over weeks. • National Cancer Institute

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Profile picture for Jeff Marchi @jeffmarc

@brbriggs
And then there is this

External Beam Radiation Therapy (EBRT) differs significantly from diagnostic X-ray treatment, primarily in dose and purpose. While both use photon beams from similar-looking machines, EBRT uses much higher-energy radiation to destroy cancer cells. EBRT is a localized cancer treatment, often delivered in fractions over weeks. • National Cancer Institute

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@jeffmarc I imagine the oncologist told him that EBRT is just X-rays to be reassuring.

That is technically correct, but as both you and I mentioned, they tend to use the term just for imaging these days, so it's not typical medical jargon.

So everyone gets to be right today. 🙂

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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 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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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
Here are the instructions Mayo Clinic gave to one of their Pluvicto patients
For three days: drink at least eight glasses or water or other non-alcoholic liquid each day.

For one day: use separate bathrooms when possible.

Males should sit while using the toilet to prevent splashing of urine.
 Clean up spilled urine yourself. Wipe with damp toilet tissue and flush down the toilet.
Flush twice, and close lid if applicable.

Contact with children under 10: For one day, Do not be closer than arms' length for an extended period of time.

Contact with pregnant women: For two days, sleep in separate bed from your partner if they are pregnant.

It is safe to share a bed with a person who is not pregnant or under 10 years old

You may travel home by car or plane immediately after treatment.

You may stay in a hotel the night of treatment.

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Profile picture for cal77 @cal77

Hi,They are thinking of trying Pluvicto with my husband. What is the prognosis with this? When I googled it, I read 15 months increased survival! That doesn't sound very good to me..Anyone had Pluvicto? How are you doing?This is all so scary...What about Immunotherapy for Stage 4 Prostate cancer? His PSA is up to 500, although 2 weeks ago it dropped to 490 and didn't increase..so we were thankful for that..Thanks,

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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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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
I know one guy who went to Austria to get actinium you could do that and get it right away.

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Profile picture for Jeff Marchi @jeffmarc

@lag
I know one guy who went to Austria to get actinium you could do that and get it right away.

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@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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