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.

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How much do you trust your oncologist?

He/she is just totally wrong in telling you the FDA doesn't have enough data to support it's use.

It USED to be that you had to have been treated with chemotherapy before qualifying for Pluvicto. That is no longer true. I just had my fifth Pluvicto treatment and I elected to not have chemotherapy.

There seems to be a hierarchy or tier to all the various types of cancer treatments available. A person newly diagnosed would not likely start out with Pluvicto. It's quite a ways down the line after several other, less drastic, avenues have been tried and have run their course.

It sounds like you might benefit from a second opinion from a different, more knowledgeable oncologist.

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@philnob

My experience with Pluvicto hasn’t begun yet because my Oncologist tells me the FDA doesn’t have enough data to support its use. I am told that I have to be treated
with chemotherapy before I qualify for Pluvicto.
Can someone help me make sense of this.
Thank you, Philnob

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You are getting very bad advice from your oncologist! Pluvicto has been approved by the FDA for several years for commercial use, after many years of clinical trials and peer-reviewed publications. Second, it is no longer a requirement to undergo chemotherapy before Pluvicto. You need to find a new oncologist ASAP. This one is either not current on prostate cancer treatments or doesn't want to bother getting up to date. Run, don't walk, away!

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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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This is almost exactly my course. However, I start my first Pavo October 10 and my current PSA is just over 100. So I am concerned. I do live alone and no close family. So I am going at it solo. Which does make isolating myself much easier! LOL!!!
The constant pain is a problem and getting drugs here in central California is a problem as well. Our hospital has bought out most of the doctors and I think they want to be the number one hospital in the nation With the lowest opioid prescription rate.
But I am still able to get along OK and so I am thankful for that

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@eugenelapietra1

76 years old in the same boat your dads in. Treatment #1 not bad at all, treatment #2 a little rough, Treatment #3 a total nightmare, Treatment #5 I didn't think I was going to survive. I don"t have a choice I'll take Treatment #5 and pray..........The rub is , everyone may have a different experience so I suggest gathering more testimonials . Pluvicto with all its unknowns is still the only game in town. If you decide to go through with the treatments you can contact me and I'll share with you some tips on how to make your dads trip easier. God Bless ,Gene

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My dad - 80 yr old just started pluvicto. He has had one treatment, next one is in October.
You mention treatment gets rougher, may I ask what we can expect?
Also- did your psa go up anytime after treatment? His is up from 100 to 400.
Worried daughter - I appreciate anything information you are willing to share.

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I was a clinical trial patient for Pluvicto Nov. 2021-May 2022, U. Of Chicago, standard 6 treatment 6 weeks apart. It was a last resort having been through most all standard protocol of surgeries, drugs, radiation, etc. I am stage 4 metastatic castration-resistant. At that time, data showed an typical 11-15 months life extension. My PSA dropped to almost undetectable, PET scans showed many tumors disappeared and others greatly reduced in size. I had a day or two of feeling mildly sick after each treatment, but very, very tolerable. It definitely kicked the can down the road.
Sept. 2024, PSA has shown slight rise and tumors are growing again. Having ruled out other options for one reason or another, many of which I have had, I have started the Pluvicto 6 treatments for the second time, completing the first (#7) three weeks ago. I follow the same post treatment isolation requirements due to the radiation. I had a week of mild upset stomach and annoying headache this time. In three weeks after the 2nd treatment (#8), I"ll have another PET scan to see how the tumors are doing. The PSA has stablized extremely low.
Thus, FOR ME, it saved my life once, so the doctors and I see this as the best option, and I'm doing it again. There is no published data on a patient going through these treatments twice.
Since Pluvicto finds and treats virtually every prostate cancer cell no mater were it is located in the body, I consider it an excellent option for a metastatic patient.

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On Chemo Hope to do 177 after My PSA up to 41 What is yours

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@smc24

I was a clinical trial patient for Pluvicto Nov. 2021-May 2022, U. Of Chicago, standard 6 treatment 6 weeks apart. It was a last resort having been through most all standard protocol of surgeries, drugs, radiation, etc. I am stage 4 metastatic castration-resistant. At that time, data showed an typical 11-15 months life extension. My PSA dropped to almost undetectable, PET scans showed many tumors disappeared and others greatly reduced in size. I had a day or two of feeling mildly sick after each treatment, but very, very tolerable. It definitely kicked the can down the road.
Sept. 2024, PSA has shown slight rise and tumors are growing again. Having ruled out other options for one reason or another, many of which I have had, I have started the Pluvicto 6 treatments for the second time, completing the first (#7) three weeks ago. I follow the same post treatment isolation requirements due to the radiation. I had a week of mild upset stomach and annoying headache this time. In three weeks after the 2nd treatment (#8), I"ll have another PET scan to see how the tumors are doing. The PSA has stablized extremely low.
Thus, FOR ME, it saved my life once, so the doctors and I see this as the best option, and I'm doing it again. There is no published data on a patient going through these treatments twice.
Since Pluvicto finds and treats virtually every prostate cancer cell no mater were it is located in the body, I consider it an excellent option for a metastatic patient.

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Your info is much appreciated. No dry mouth? What’s the age? How long have you had PCa? Thanks!

REPLY
@smc24

I was a clinical trial patient for Pluvicto Nov. 2021-May 2022, U. Of Chicago, standard 6 treatment 6 weeks apart. It was a last resort having been through most all standard protocol of surgeries, drugs, radiation, etc. I am stage 4 metastatic castration-resistant. At that time, data showed an typical 11-15 months life extension. My PSA dropped to almost undetectable, PET scans showed many tumors disappeared and others greatly reduced in size. I had a day or two of feeling mildly sick after each treatment, but very, very tolerable. It definitely kicked the can down the road.
Sept. 2024, PSA has shown slight rise and tumors are growing again. Having ruled out other options for one reason or another, many of which I have had, I have started the Pluvicto 6 treatments for the second time, completing the first (#7) three weeks ago. I follow the same post treatment isolation requirements due to the radiation. I had a week of mild upset stomach and annoying headache this time. In three weeks after the 2nd treatment (#8), I"ll have another PET scan to see how the tumors are doing. The PSA has stablized extremely low.
Thus, FOR ME, it saved my life once, so the doctors and I see this as the best option, and I'm doing it again. There is no published data on a patient going through these treatments twice.
Since Pluvicto finds and treats virtually every prostate cancer cell no mater were it is located in the body, I consider it an excellent option for a metastatic patient.

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my husband had had his first pluvicto 9/11
stage 4 bone mets
your story gives us hope!
thank you for sharing

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@redroadtraveler

How much do you trust your oncologist?

He/she is just totally wrong in telling you the FDA doesn't have enough data to support it's use.

It USED to be that you had to have been treated with chemotherapy before qualifying for Pluvicto. That is no longer true. I just had my fifth Pluvicto treatment and I elected to not have chemotherapy.

There seems to be a hierarchy or tier to all the various types of cancer treatments available. A person newly diagnosed would not likely start out with Pluvicto. It's quite a ways down the line after several other, less drastic, avenues have been tried and have run their course.

It sounds like you might benefit from a second opinion from a different, more knowledgeable oncologist.

Jump to this post

Redroadtraveler,
This what is said. Norvartis Pharmaceutical completed a clinical trial (PSMA-617 Lu-177) and was approved (USFDA March 23, 2022) for one round of 6 treatments. It is now called Pluvicto. There is plenty of supporting historical and current data on the trial(s) and currect usage. After all, it was a clinical trial. It is now an approved option for metastatic castration-resistant prostate cancer. BUT, there is no data that I have found regarding REPEATING THE ENTIRE 6 ROUNDS, #7 through #12) which I just started this Sept. It was not designed for, tested or approved beyond one tound of 6 treatments. I was one of the ORIGINAL clinical trial patients 2021-2022, so I'm minutely aware of the existing data, as I am included in the findings. When rounds #7 through #12 are completed in April 2025, perhaps that new data will be released.

REPLY
@smc24

Redroadtraveler,
This what is said. Norvartis Pharmaceutical completed a clinical trial (PSMA-617 Lu-177) and was approved (USFDA March 23, 2022) for one round of 6 treatments. It is now called Pluvicto. There is plenty of supporting historical and current data on the trial(s) and currect usage. After all, it was a clinical trial. It is now an approved option for metastatic castration-resistant prostate cancer. BUT, there is no data that I have found regarding REPEATING THE ENTIRE 6 ROUNDS, #7 through #12) which I just started this Sept. It was not designed for, tested or approved beyond one tound of 6 treatments. I was one of the ORIGINAL clinical trial patients 2021-2022, so I'm minutely aware of the existing data, as I am included in the findings. When rounds #7 through #12 are completed in April 2025, perhaps that new data will be released.

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Yes.

I have now completed my six rounds of Pluvicto. More Pluvicto treatments beyond six rounds puts us right back into unknown, experimental territory.

Pluvicto seems to be the current "final frontier" of treatments available from the allopathic world. As far as I know, once we have completed the initial six rounds that's the end of any FDA approved treatments. We are on our own at that point. My experience with Pluvicto has been very good. All the oncologist can offer at this point is simply continuing to monitor my condition.

If it begins to get significantly worse I will be lobbying for me to jump into the experimental world of additional Pluvicto treatments.

I wish you good luck with your additional Pluvicto treatments.

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