Can anyone share their experience with Pluvicto?

Posted by vcash @vcash, Apr 22, 2024

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.

@jeffmarc

We were posting within 4 minutes of each other, your reply was not there when I started my reply, funny how that happens. Fortunately, we both supplied different information.

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Great minds think alike! 🙂

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@jeffmarc

To @lsk1000
Pluvicto can also affect healthy cells, particularly those that express PSMA, which is a protein found on some healthy cells as well as cancer cells. This can lead to side effects like low blood cell counts, kidney damage, and fatigue,

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Thank you, I was just alerted to the risk to the kidneys by my wife. With chronic kidney disease I may not be a candidate if it comes to that. It looks like Xtandi with or without Lupron might be my best option to reverse PSA rise,

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@lag

Pluvicto presents a much lower risk of radiation damage to healthy cells, because it is not a beam, but a molecule that targets only cells that express PSMA. Here is an excerpt from the Mayo entry about Pluvicto:

Treatments that target PSMA: Radiopharmaceutical treatments can target a protein that's common on prostate cancer cells called prostate-specific membrane antigen. It's also called PSMA. One radiopharmaceutical medicine that works in this way is lutetium Lu-177 vipivotide tetraxetan (Pluvicto). This medicine contains a molecule that finds and sticks to the PSMA on prostate cancer cells. The medicine also contains a radioactive substance. A healthcare professional gives this medicine through a vein. The medicine finds the prostate cancer cells and releases the radiation directly into the cells. It can treat prostate cancer anywhere in the body. PSMA therapy only works if the prostate cancer cells have the PSMA protein. Side effects include dry mouth, dry eyes, nausea and feeling very tired.

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Thank you, Appreciate your reply. I was just alerted to the risk to the kidneys by my wife. With chronic kidney disease I may not be a candidate if it comes to that. It looks like Xtandi with or without Lupron might be my best option to reverse PSA rise,

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@lsk1000

Thank you, I was just alerted to the risk to the kidneys by my wife. With chronic kidney disease I may not be a candidate if it comes to that. It looks like Xtandi with or without Lupron might be my best option to reverse PSA rise,

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Xtandi (Enzalutamide) has a lot more side effects than Nubeqa (Darolutamide) But they both do essentially the same thing. Nubeqa also doesn’t pass the blood brain barrier, Xtandi does acdcthat affects cognitive function over time.

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@lsk1000

Has anyone heard information on whether the radiation of Pluvicto targets and damages healthy tissue as well the cancerous tissue? Asking because salvage radiation damaged my bladder and destroyed the urethra. Want to avoid a reoccurrence.

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Regarding possible damage to other healthy tissue from Pluvicto:
The saliva glands and prostate cancer cell membrane structure "looks" similar through Pluvicto's eyes. It is not uncommon for some of the saliva glads (there are many) to be damaged. This is why dry mouth is a commonly listed side effect. But, not to worry.
I was a Novartis Pharmaceutical clinical trial patient in 2021-22 for what became Pluvitco. The delivery of the product was different than it is now and consisted of two separate infusions. Now, it's one injection. During the trial, the patient would suck on ice chips and hold an ice pack around the throat prior, during and several hours after the procedure. The purpose was to chill the throat resulting in reduced blood flow carrying the Pluvitco to the saliva glands in an attempt to minimize damage. I had some, but minimal change to my saliva output.
Going forward... In 2024, I started another 6 round of Pluvitco. Rare, but true. I'm in-between #4 and #5. This time, it has been determined by the medical professionals the potential saliva gland damage is minimal enough that no chilling to the throat area is being given as standard treatment. For the record, I still do it each time, regardless. I do have reduced saliva from prior to the 2021 trial, but considering I've had 10 treatments (2 to go for me, but only 6 is normal), the dry mouth is minor. I drink liquids more often and would not eat salty potato chips with a drink. So, as I said earlier, don't worry about it. You have bigger issues to worry about. Good luck.

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@jeffmarc

Xtandi (Enzalutamide) has a lot more side effects than Nubeqa (Darolutamide) But they both do essentially the same thing. Nubeqa also doesn’t pass the blood brain barrier, Xtandi does acdcthat affects cognitive function over time.

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Thanks Jeff. Appreciate your responses. very helpful.

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@smc24

Regarding possible damage to other healthy tissue from Pluvicto:
The saliva glands and prostate cancer cell membrane structure "looks" similar through Pluvicto's eyes. It is not uncommon for some of the saliva glads (there are many) to be damaged. This is why dry mouth is a commonly listed side effect. But, not to worry.
I was a Novartis Pharmaceutical clinical trial patient in 2021-22 for what became Pluvitco. The delivery of the product was different than it is now and consisted of two separate infusions. Now, it's one injection. During the trial, the patient would suck on ice chips and hold an ice pack around the throat prior, during and several hours after the procedure. The purpose was to chill the throat resulting in reduced blood flow carrying the Pluvitco to the saliva glands in an attempt to minimize damage. I had some, but minimal change to my saliva output.
Going forward... In 2024, I started another 6 round of Pluvitco. Rare, but true. I'm in-between #4 and #5. This time, it has been determined by the medical professionals the potential saliva gland damage is minimal enough that no chilling to the throat area is being given as standard treatment. For the record, I still do it each time, regardless. I do have reduced saliva from prior to the 2021 trial, but considering I've had 10 treatments (2 to go for me, but only 6 is normal), the dry mouth is minor. I drink liquids more often and would not eat salty potato chips with a drink. So, as I said earlier, don't worry about it. You have bigger issues to worry about. Good luck.

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Thanks SMC, I wish you the best with your treatment.

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@redroadtraveler

I am 80 years old with stage IV prostate cancer which has metasasized throughout my bones. Been on various immunotherapy treatments for 3-4 years (most recent being Keytruda). All of them have run their course and are no longer effective.

I tried for several months to get the Pluvicto treatment but they didn't do it due to the FDA saying a person had to have had chemotherapy first. I elected to NOT have chemotherapy as it made no sense to me to kill off everything and hope that the good comes back faster than the bad.

Very recently, the manufacturer began to question the necessity for chemotherapy prior to Pluvicto and I am one of the first people to get Pluvicto without having had chemotherapy.

Pluvicto treatment protocol is an IV injection every six weeks for a total of six times. It is a heavy duty radiation treatment but it is NOT chemotherapy. It targets the cancer cells instead of the shotgun approach of chemotherapy.

I am halfway through my Pluvicto treatment. I have had three injections and will get number four in a week.

You will get detailed scans prior to the treatment, and the doctor will monitor your blood work closely and see how you are tolerating treatment before giving you the next injection.

After the injection, they turn you loose when your radiation level is three at a distance of three feet.

We joke that I "glow in the dark" after the injection but there is a certain amount of truth in that. I wanted this treatment for myself, but was concerned about "collateral damage" of radiation to anyone else around me. The official guidelines tell you to maintain a three foot distance from everyone for three days, and for seven days from pregnant women and small children (and by extension small animals like cats or dogs).

Every radioactive substance has a half-life and decays over time. I purchased a dosimeter (Geiger counter) from Amazon for about $100 to monitor my actual condition rather than simply going by their guidelines.

My personal experience is that, for me, the guidelines are not strict enough. I do not want to cause collateral radiation damage to anyone else, so monitor my radiation level daily at three feet, one and a half feet, and right next to my skin.

My personal protocol is to isolate myself for one week. I am alone in the bedroom, reading, binge watching Netflix, etc., leaving only briefly to get something to eat or go to the bathroom.

During week two I loosen up a bit, allowing brief contact such as a hug or a handshake, but no prolonged contact.

By the end of two weeks from my injection, my personal radiation level is down to zero at my skin, so I no longer have any danger of giving collateral radiation damage to anyone. At that point I resume sleeping in the same bed with my wife and have no issues with personal contact with others.

Everyone reacts differently to different treatments. I have tolerated it reasonably well. The worst side effect has been serious constipation. Also a moderate increase in fatigue.

I would like to get another scan now, halfway through treatment, but insurance won't pay for it. I will get another scan when all treatments are done so I will at least have a before and after reading on how effective (or ineffective) it has been.

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Hello. I’m the widow of a Pluvicto treated Awesome Godly Man! He was advised to have the chemo before the Pluvicto. Don’t tell my husband Not to do something. He was Always “game on,” when it came to his cancer treatment. Granted he was a 20+ year survivor of Melanoma-from 2002-do I need to tell you BRCA2. Anyway, he passed away 9/11/2024; yet retired from full time work 9/1/2024, although bedridden Hospice at that point. Driving and working until 8/9/2024. He completed his last Pluvicto #6 on 5/14/2024. He had absolutely no side effects from Pluvicto, especially when we realized Zofran caused constipation and told his team he wasn’t taking the Zofran. The “chemo wrecked me.”
There’s So much more to his story, but fight fight fight is what my husband chose to do and we supported him all the way. He was 68 years old. I was an Emergency nurse for 30+ years and a Hospice nurse 41 years ago. Every single human is different. Godspeed and blessings to all of you.

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3+ years of fighting, failed chemos, sometimes horrible side effects, but tomorrow (Tuesday 24JUN25) I start Pluvicto.
Good to read some of this. The on-line side effects are....scary. The MD's keep adding to the list the closer we get to radioactivity.

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Be aware that Pluvicto 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 hereditary and 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. I don’t know if these are the only genetic changes that cause Pluvicto to work much better or more poorly.

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