Can anyone share their experience with Pluvicto?

Posted by vcash @vcash, Apr 22 8:35pm

My 85 year old dad has prostate cancer that has metastasized to his bones. Zytiga is no longer effective. He is considering Pluvicto. I would appreciate input from those who have used Pluvicto.

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

To Baxterlee77:

Until fairly recently it WAS FDA protocol that if you had not already had chemotherapy you could not get the Pluvicto treatment. I WANTED the Pluvicto treatment but was denied due to me (by my choice) NOT having had chemotherapy.

This restriction began to be grudgingly lifted around December 2023 when I was able to start Pluvicto treatment without having had chemotherapy.

If you WANT Pluvicto, but are still being told by your oncologist that you can't get it if you haven't had chemotherapy, he is simply not up to date on the current restrictions. This is from my personal experience where I tried to receive the Pluvicto treatment for several months, was denied treatment due to FDA restrictions saying I had to have had chemotherapy first, and then having that restriction lifted so that I could begin receiving the Pluvicto treatment last December.

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@desertsky46

I am a 71 year old and was diagnosed at stage 4 a little over 7 years ago. I found a great oncologist at the Rocky Mountain Cancer Center in Lone Tree, Colorado, who hit the right combination of oral and Lupron treatment right away. I did have external beam radiation on my left femur and spine for areas that were in bad shape and to help prevent fracture. I also had an ablation done to my L3. He also gave me injections of Xgeva to help build bone density My PSAs stayed very low for about 6 years then the cancer went castration resistant.

I switched to the Mayo Clinic for new treatments. I did have the chemo last year and I tolerated it extremely well. Only some minor extra fatigue. PSA went from 50s down to 5.6, considered normal at my age and stage. But PSA quickly shot back up into the 30s and bone pain started. I was approved for Pluvicto at the beginning of the year and have just finished #3. My PSA is not going down as hoped but the Dr thinks it is too early to determine efficacy just yet. I had an an initial uptake scan after the first treatment and it showed good uptake.

My main issue is the bone pain is unrelenting and is much worse for the 3 or so weeks after treatment. Dr said is is an arthritis like reaction to the treatment and I am seeing a palliative care Dr for that. I take light opioids 4-5 times a day and when the pain persists, a light steriod. Since I have only one kidney and it is in stage 2 failure, I am only allowed 10 steroid pills a month so rationing is the key. They work extremely well.

As far as being radioactive, my Dr said in my cse, don't worry too much as the type and strength would not cause problems for healthy adults and pets for 20 years. I just have to limit exposure to children and pregnant women for the first 3 days.

I hope this rounds out what you are hearing and gives you a little more perspective.

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Thanks for the hugs!

An update. Since the pain is not well controlled I had another bone scan and CT with contrast. As I read the results, the Pluvicto isn't working well for me and the cancer may still be slowly spreading. I see my oncologist next week for a more thorough explanation.

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@desertsky46

Thanks for the hugs!

An update. Since the pain is not well controlled I had another bone scan and CT with contrast. As I read the results, the Pluvicto isn't working well for me and the cancer may still be slowly spreading. I see my oncologist next week for a more thorough explanation.

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Maybe, he will have a more positive read?

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@desertsky46

Thanks for the hugs!

An update. Since the pain is not well controlled I had another bone scan and CT with contrast. As I read the results, the Pluvicto isn't working well for me and the cancer may still be slowly spreading. I see my oncologist next week for a more thorough explanation.

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I hope your oncologist gave you enough time to discuss the results and the plan going forward. My husband's medical oncologist has mentioned docetaxel, cabazitaxel, and Xtandi as possibilities if Pluvicto is not effective. Good luck to you, and please keep us posted.

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@redroadtraveler

To Baxterlee77:

Until fairly recently it WAS FDA protocol that if you had not already had chemotherapy you could not get the Pluvicto treatment. I WANTED the Pluvicto treatment but was denied due to me (by my choice) NOT having had chemotherapy.

This restriction began to be grudgingly lifted around December 2023 when I was able to start Pluvicto treatment without having had chemotherapy.

If you WANT Pluvicto, but are still being told by your oncologist that you can't get it if you haven't had chemotherapy, he is simply not up to date on the current restrictions. This is from my personal experience where I tried to receive the Pluvicto treatment for several months, was denied treatment due to FDA restrictions saying I had to have had chemotherapy first, and then having that restriction lifted so that I could begin receiving the Pluvicto treatment last December.

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Since you started the treatment in December, how is your cancer doing now. Was it a good choice

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I am tolerating the treatment fairly well. At this point in the history of allopathic medicine this Pluvicto treatment is the last arrow in their quiver, so it was my ONLY choice in allopathic medicine. (I declined chemotherapy because it made no sense to me to kill off everything and hope that the good comes back faster than the bad.)

They won't do the real in depth scans until the six treatments are completed. I am receiving treatment number 5 next week, so it will be another 2-3 months before I can get a real reading on my then current condition after having gone through all six Pluvicto treatments. I am doing well with the treatments, however, so I have hopes that they have at least been somewhat effective.

I am also doing non-allopathic approved protocols.

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@redroadtraveler

For those following my Pluvicto treatment, my personal protocol and why, I am now two weeks after my fourth Pluvicto radiation infusion.

My current radiation readings are:

Arms length (3 feet): 0.01

One foot away: 0.03

Next to body: 0.22

If you recall, they turn you loose from the hospital when your 3 foot reading is around 3.

So my personal experience as above shows a decline in my 3 foot measurement from a 3 to a negligible 0.01.

With my next to body reading having declined to 0.22 I now deem myself to be relatively safe to be with people and to have extended contact.

My concern on all of this is to NOT cause "collateral radiation damage" to any caregivers, friends and loved ones. The cumulative level of damage through exposure is the strength of the radiation times the amount of time exposed. At my current next to body reading of 0.22 millirems per hour a person who was in constant contact with me for one hour would receive only 0.22 millirems of radiation. This may be compared to the standard cumulative radiation limit level of 100 millirems per year.

To summarize, my personal protocol is to isolate myself completely for one week, to allow casual, but no extended contact for the second week after treatment, and to resume "normal" life thereafter until my next treatment which comes in four more weeks if thete are no complicating factors.

Hope this information has been useful to those who are interested in a deeper dive into the effect of Pluvicto treatments on their body as it relates to radiation exposure to caregivers, friends and family.

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Hi redro . First off wishing you the best results , my friend so far had 2 P treatments , feels great and no side effects .
My concern is that I'd picked him up immediately following his first treatment and it was a 2 hour ride to get him home with the car windows closed and he in the back seat diagonally behind me .
I see that you are well versed in exposure issues and wonder if you feel that I may have been affected by my immediate , enclosed , proximate 2 hour contact?

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@waldipup

Hi redro . First off wishing you the best results , my friend so far had 2 P treatments , feels great and no side effects .
My concern is that I'd picked him up immediately following his first treatment and it was a 2 hour ride to get him home with the car windows closed and he in the back seat diagonally behind me .
I see that you are well versed in exposure issues and wonder if you feel that I may have been affected by my immediate , enclosed , proximate 2 hour contact?

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First of all, the usual "medical disclaimer". I am not a doctor. This is a question you should pose to the radiation doctor.

Having said that, I can tell you my personal experience.

With you driving and him sitting diagonally in the back seat you are about three feet away from each other. They turn you loose from the Pluvicto administration when your radiation level is around three. Radiation exposure is cumulative so during the two hour drive you are getting about a six - not great but in my opinion nothing to be particularly concerned about.

I live about an hour and a half drive from my treatment center. I too have minimal side effects from the treatment. As such. I drive myself to and from the treatment in order to minimize me exposing anyone else.

After treatment. I completely isolate myself for one week based on my declining radiation levels. They tell you to isolate at least three feet for three days, but I am personally not comfortable that that is sufficient for my tastes. I then restrict my close contact for a second week (no sleeping together, brief hugs or handshakes ok but no prolonged physical contact etc.) After those two weeks my radiation level is negligible so all contact is fair game.

Since your friend also has minimal side effects, is there any reason he couldn't drive himself?

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@redroadtraveler

First of all, the usual "medical disclaimer". I am not a doctor. This is a question you should pose to the radiation doctor.

Having said that, I can tell you my personal experience.

With you driving and him sitting diagonally in the back seat you are about three feet away from each other. They turn you loose from the Pluvicto administration when your radiation level is around three. Radiation exposure is cumulative so during the two hour drive you are getting about a six - not great but in my opinion nothing to be particularly concerned about.

I live about an hour and a half drive from my treatment center. I too have minimal side effects from the treatment. As such. I drive myself to and from the treatment in order to minimize me exposing anyone else.

After treatment. I completely isolate myself for one week based on my declining radiation levels. They tell you to isolate at least three feet for three days, but I am personally not comfortable that that is sufficient for my tastes. I then restrict my close contact for a second week (no sleeping together, brief hugs or handshakes ok but no prolonged physical contact etc.) After those two weeks my radiation level is negligible so all contact is fair game.

Since your friend also has minimal side effects, is there any reason he couldn't drive himself?

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Hi and thanks . My friend told me 3 feet , but no women . It hit me that if "no women" , then it can penetrate , and penetrate a man just as easily , and then I realized I shouldn't have done it .
But you say 6 for two hours at 3 ft. enclosed is not too bad?

He'd heard there may be debilitating side effects so he was uncomfortable to drive into Manhattan NY and possibly be stuck if unable to drive home .
But so far two treatments with no side effects .
Unfortunately , just before his third treatment his Hemoglobin dropped to the 7's requiring a blood transfusion and now he is experiencing severe lower back pain related to the PC so his third treatment is on hold .
Thanks again .

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@redroadtraveler

First of all, the usual "medical disclaimer". I am not a doctor. This is a question you should pose to the radiation doctor.

Having said that, I can tell you my personal experience.

With you driving and him sitting diagonally in the back seat you are about three feet away from each other. They turn you loose from the Pluvicto administration when your radiation level is around three. Radiation exposure is cumulative so during the two hour drive you are getting about a six - not great but in my opinion nothing to be particularly concerned about.

I live about an hour and a half drive from my treatment center. I too have minimal side effects from the treatment. As such. I drive myself to and from the treatment in order to minimize me exposing anyone else.

After treatment. I completely isolate myself for one week based on my declining radiation levels. They tell you to isolate at least three feet for three days, but I am personally not comfortable that that is sufficient for my tastes. I then restrict my close contact for a second week (no sleeping together, brief hugs or handshakes ok but no prolonged physical contact etc.) After those two weeks my radiation level is negligible so all contact is fair game.

Since your friend also has minimal side effects, is there any reason he couldn't drive himself?

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I don't put much faith in what the radiation doctors have to say about the radiation issues .
They released him with no warnings regarding a possible cab driver (or in my case , friend driver) , and being in Manhattan , he very likely could have taken a bus or train at rush hour pressed against others for periods of time .

So they're not too focused on that issue . And I don't think they know for sure just where "dangerous" ends and "ok" begins anyway , it's kinda an uncertainty .

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