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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.

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deccakid | @deccakid | Apr 12 6:47am
In reply to @cal77 "@deccakid Thanks...They told us we should have separate dishes, or rather paper plates and separate utensils...." + (show)
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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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@cal77
Howdy Ma'am,
It sounds like they're also advising common sense practices, but keep the faith!! As I've said (and gone through before)...it's better to deal with the effects than not treat at all...I hate to be blunt, but that would be the most difficult scenario, right???
Yep, the whole thing is seemingly unreal, but nothing you can't handle. Be strong!!
Blessings!!!!!

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deccakid | @deccakid | Apr 12 6:50am
In reply to @cal77 "@deccakid Thanks...They told us we should have separate dishes, or rather paper plates and separate utensils...." + (show)
Profile picture for cal77 @cal77

@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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@cal77
Oh!!...DO remember these precautions are only for the short term 3-5 day window...(I think)...That should make the process more palatable...
Be strong, Be brave and be blessed!

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deltadawn78 | @deltadawn78 | Apr 15 3:45pm
In reply to @jeffmarc "@cal77 There is no standard amount of time. Pluvicto works. Four months would be on the..." + (show)
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@cal77
There is no standard amount of time. Pluvicto works. Four months would be on the Short side.

The guy that runs the Advance prostate cancer online forum for the reluctant brotherhood had his Pluvicto treatment about four months ago. His treatment was so successful that after three treatments, his PSA dropped a .05 and he did not take any more treatments, holding them off till later. His PSA has stayed close to that since the Treatments. He’s had prostate cancer for 12 years and has had almost every treatment you’ve ever heard of.

The biggest problem is that it is not successful for everybody, about 40% of people don’t get good results. The other 60% vary from 50% reduction in PSA to a major reduction in PSA. You need to see what happens to figure out how well it’s going to work for him. Some people get 18 months out of it.

You’re getting a little overworked about the radiation. I know some people that have been told many fewer requirements for keeping apart. You don’t have to worry about it going through a wall.

A 20 minute ride is not enough time for a significant radiation transfer. You could always rent a bigger car for two days, But I bet the doctors will tell you that’s not a problem.

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@jeffmarc
Sure would like to talk to the guy from Reluctant Brotherhood to find out who his dr. is or where he goes for treatment. Thank you.

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Jeff Marchi | @jeffmarc | Apr 15 6:12pm
In reply to @deltadawn78 "@jeffmarc Sure would like to talk to the guy from Reluctant Brotherhood to find out who..." + (show)
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@jeffmarc
Sure would like to talk to the guy from Reluctant Brotherhood to find out who his dr. is or where he goes for treatment. Thank you.

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@deltadawn78
There’s a meeting tomorrow Thursday 4-16 at 5 PM Pacific time. You can speak to Peter, he runs the meeting.

Join: https://zoom.us/j/9512590084

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deccakid | @deccakid | Apr 16 8:27am
In reply to @cal77 "Hi,They are thinking of trying Pluvicto with my husband. What is the prognosis with this? When..." + (show)
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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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I had my first Pluvicto infusion yesterday. Interesting...
...I live alone, so I don't have to exercise as many precautions as those around others. The day after effects are the obvious...tired, but unlike the tiredness of radiation, chemo or ADT...No effects on appetite. A bit of dry mouth and throat...nothing debilitating...I'll keep you posted as time goes (flies) by.
Blessings to all

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deltadawn78 | @deltadawn78 | Apr 16 1:09pm
In reply to @jeffmarc "@deltadawn78 There’s a meeting tomorrow Thursday 4-16 at 5 PM Pacific time. You can speak to..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@deltadawn78
There’s a meeting tomorrow Thursday 4-16 at 5 PM Pacific time. You can speak to Peter, he runs the meeting.

Join: https://zoom.us/j/9512590084

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@jeffmarc

Thank you!

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archgac | @archgac | 6 days ago

A WHO doctor recommended Lutetium 177 (Pluvicto) for prostate cancer. He said it prolonged his life for c. 5 years. He eventually died at 79 in Cape Town. The drug is legal in the RSA. He also mentioned Lithidium. Does anyone know of, or used, these drugs and, if so, what was the result?

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northoftheborder | @northoftheborder | 6 days ago
In reply to @archgac "A WHO doctor recommended Lutetium 177 (Pluvicto) for prostate cancer. He said it prolonged his life..." + (show)
Profile picture for archgac @archgac

A WHO doctor recommended Lutetium 177 (Pluvicto) for prostate cancer. He said it prolonged his life for c. 5 years. He eventually died at 79 in Cape Town. The drug is legal in the RSA. He also mentioned Lithidium. Does anyone know of, or used, these drugs and, if so, what was the result?

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Several members here in the forum have shared their experiences with Pluvicto -- you can find their posts by typing the word into the search box at the top of the page.

As for how long Pluvicto extends overall survival, that's actually surprisingly difficult to answer, for reasons I discussed here:
https://connect.mayoclinic.org/discussion/does-pluvicto-work/
(The answers range from "not at all" to "apparently indefinitely", depending on the patient.)

Best of luck with your upcoming decisions and treatment.

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aoi | @aoi | 2 days ago

Husband who is overall healthy and fit is commending pluvicto after 6 years of various therapies - I'm curious about the experience, outcomes and follow-up of other pluvicto participants

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Jeff Marchi | @jeffmarc | 2 days ago
In reply to @aoi "Husband who is overall healthy and fit is commending pluvicto after 6 years of various therapies..." + (show)
Profile picture for aoi @aoi

Husband who is overall healthy and fit is commending pluvicto after 6 years of various therapies - I'm curious about the experience, outcomes and follow-up of other pluvicto participants

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Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

Be aware that it works really well for 33% of people OK for 33% of people and not at all for 33% of people.
If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.

If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant.

Messages from other people about how their Pluvicto treatment went
https://connect.mayoclinic.org/comment/1380711/
https://connect.mayoclinic.org/discussion/can-anyone-share-their-experience-with-pluvicto/
Here are instructions from Mayo that are less intensive than other recommendations
I just dug out the instructions we received at Mayo Rochester from the team that gave my husband Pluvicto. Here they are:
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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