Anyone have experience with pluvicto.. My husband just had his first treatment today. He has advanced Prostate cancer. Started in- had radiation for 42 days, 2019 recurred and had hormone therapy, 2022 metastasized and received eligard and xtendi, 2023 xtendi no longer effective and he was changed to eligard and Lynparza. August 2024, PET scan showed increased cancer so Lynparza was discontinued. Oncologist suggested chemo, which he was in no condition to take. We decided to take my husband to Mayo Clinic for a second opinion and Pluvicto was recommended. So, this is where we are now, Pluvicton and will still be receiving hormone therapy. He is under home health care and palliativie care for assistance in his care. He is extremely weak and has little appetite and it is a battle to get him to drink enough fluids. Any tips or experience would be wecome.
Pluvicto Experiences?: Anyone have... - Advanced Prostate...
Pluvicto Experiences?
Hi,
I went through 5 cycles of Pluvicto. One thing it did to me was kill my salivary glands. I am drinking water all the time. It gave me diarrhea and constipation. It does not help with appetite. You know the old saying, “You can lead a horse to water, but you can’t make him drink”. You just have to ensure he is getting enough hydration. I am sure this treatment was a little easier for me since I am 20 years younger. Please reach out if you have any questions. I wish you both the best of luck.
Did they offer you the J591 agent to be used with LU-177? It does not bind to salivary glands, so limits salivary gland toxicity. I have no experience, just read this and took note.
That is interesting. I definitely have persistent xerostomia from the last treatments and am doing Pluvicto again. I will mention the other ligand but they probably can just get what they get.
I took a salivary gland hit from radiation to the neck 10 yrs ago, hence my interest. I manage it with Biotene at night, to help sleep.. not perfect but it helps.
I went to the dentist today and they recommended Xylimelts which are stick on things that go in your mouth and are supposed to be better than Biotene. Will try tonight.
I ordered it online, awaiting delivery. Will let you know how it goes.
i tried them a few nights and they do help? not horribly flavored at least. two do not last all night have to refresh at about 4 hours? at least i reduces the need to drink water constantly and pee it all out again. i am trying to limit the times i wake up: hot flashed, needing to pee, dry mouth, pain all togehter it amounts to more time awake than sleeping.
I ordered online and tried 2 tablets last night. Works better than Biotene. I missed half the ballgame as a result! Need more time to get used to them but encouraging start.
I’ve been using it now for 3 nights. Today noticed a lymph node issue swallowing. This is new. I checked online and there is a v long list of potential SEs, which is worrying. Am experiencing one of them. So I will lay off it for few days. In the packet no SEs mentioned, only instructions how to use in multiple languages. I hope it works out because it’s so easy to use.
Please join the Pluvicto support group on Facebook
I might check into this. Just wish Face Fuck were not such a time wasting mess. Their support groups are continuous lists with no ability to follow "threads" making it a real waste of time. I don't want to read everything everyone said every day and have to wade through all of that to find a possible reply to a question I asked. Unless there is something I am missing there is no notification of replies. I did discover a work around but still hate Face Fuck with a passion. If you put a fairly unique keyword in your question, you can search for it in your browser and go right to your thread instead of having to scroll through days and days of irrelevant crap.
I really hope that Face Fuck runs it course of popularity and that people that new networks are developed. FaceBook for emergency alert information, are you kidding me? Distribution of government information that is often blocked as spam.?t is bad enough that they are destroying our developing children. So I really want to boycott Facebook for all the terrible things that they are doing to the world?
Are there other Pluvicto support groups?
DO NOT JOIN Facebook group so much negatively
my husband had wonderful success with Pluvicto last year. He’s has chemo twice, radiation once, still takes Lupron, Nubeqa, and more! But the Pluvicto was like “magic” for him. He’s very fortunate!
We are in same situation —Dad is 86 and starting Pluvicto Nov 4. Has never had radiation before but has done docetaxel and cabazitaxel with no problems. Only now is weaker and losing appetite. Any suggestions for tolerating Pluvicto welcome. Thanks
In my experience, Pluvicto was OK, but I got a course of steroids to guard against rebound pain from my extensive mets. The only real side effect was the hit to my salivary glands that were already beaten up by radiation and chemo. Now acupuncture is helping a lot with that.
BTW my PSA rose after the first dose but then went from 99 to 5 by the end. 6 months later, it's rising again.
Also be aware the Pluvicto does not work for everyone.
Is Pluvicto another radiation therapy?
Technically, yes, as it involves radiation. However it is not given by a machine, rather by an injection of a substance that takes radioactive atoms to PSMA, a thing that is on prostate tumors (and saliva glands -- I chewed on ice chips during, but that's not been clinically proven to be effective).
The very small amount of very bad radiation kills the nearby tumor cells, then turns into a form that continues to give off lots of gamma radiation (not too bad radiation) that declines over a couple of weeks.
So you are instructed to stay 3 feet away from everyone for 3 days and avoid pregnant women, children and small animals for two weeks. Tall Allen has a very good and very specific protocol that includes things like sitting down to urinate.
Just like every treatment I've ever gotten, Pluvicto can cause fatigue.
Thanks Miccoman. Very informative. This is not covered by the Taiwan National Insurance Administration. So it could be very expensive.
Hopefully it will be soon because it is very, very expensive.
Medicare, in the US, paid $103,000 for each of the 6 shots, plus you need a PSMA PET scan before -- to be sure that your cancer is expressing (showing) PSMA, some prostate cancer doesn't so Pluvicto wouldn't work on that. The PSMA PET scan, here, runs around $30,000, so total cost is unbelievable.
Best of luck on your journey.
In my experience, Pluvicto was OK, but I got a course of steroids to guard against rebound pain from my extensive mets (they might perk him up a little and help with malaise -- anything to get him interested in life and getting some exercise).
The only big side effects were to my saliva glands that were already weak from radiation mishap and a toxic reaction to chemo. Acupuncture has helped with the saliva.
Be aware that Pluvicto doesn't work for everyone. Also my PSA rose after the first dose but eventually went from 99 to 5. 6 months later it is now rising again.
There are tons of past posts regarding Pluvicto in our H.U. history file. Just select and view them.
Note: Would you please update your bio. All info is voluntary but the info helps you and helps us too.
Good Luck, Good Health and Good Humor.
j-o-h-n
John: I’m not sure to whom the request for a bio-update was made, but it prompted me to go in and update the data I’ve reported on my Joe.
I have not been on Pluvicto, just read studies and posts here and elsewhere. I think that when one has limited options, you tend to try whatever is available and hope it works. You have done as much as you can to date, so you should have no regrets about your past choices.
Given your husband's weak condition, I would carefully research the side effects of each proposed treatment option and what real benefits it may offer, including its efficacy. Life becomes shorter and shorter as we progress through this disease and we become more desperate for a solution. As much as we are led to believe there are many effective treatments, they often less beneficial than we expect with regard to the reduction of symptoms and increasing OS.
Consider how you and your husband want to spend your time and if the treatment will allow you to enjoy your time together. Wherever time each of us has left is precious. Spending it feeling as good as possible with family and friends is important.
As an example I am now facing entering a clinical trial versus the latest FDA approved treatment. a Bipolar Androgen Therapy which rapidly cycles testosterone. This sounds like hell to me, as I can only imagine how one's body reacts. Also, these trials have shown only mixed success.
I have found that while oncologists are trying to extend our lives, they are also biased towards the clinic trials they have starting or have ongoing. Chemo for me is too debilitating to undergo again, especially as it seems to be a "hail Mary" used late in your disease when they don't think there are other options. However, this is a personal choice that each patient needs to make for themselves.
Good luck and keep us posted...
When my mom was dying of cancer I used to read to her aloud. It didn't matter if it was poetry or from a book, a passage of philosophy, or just an old novel that she loved. It may have been just the sound of a rhythmic human voice nearby which seemed to relax her and keep her happy.
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