Can anyone share their experience with Pluvicto?

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.

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.

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.

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.

Had my 5th Pluvicto thursday and am feeling great. I stopped all other medication which I'm certain was causing all the chaos in my body. After 1 week I was back to normal. No hacking or shortness of breath,no exhaustion no neuropathy, no joint pain, no blurry vision, no confusion. And I sleep great. Now I'll have to wait and see if the Pluvicto has any side affects. I'm not sure what you mean , what were my symtoms? Thank you Gene

eugenelapietra1 What were your symptoms if you don't mind me asking? Have you seen any improvement with the cancer?

Like you, I was admitted to the Pluvicto plan wthout having chemo first. Same reasons you expressed.
I had my second injection last Thursday, 09 May. I brought my geiger counter along and had the Physicist check it out. At his suggestion, I also measured the radiation of the injection syringe - at the tip, it measured about 150 mR/h and along the sides (it is inside a water-filled cylinder) it measured about 50 mR/h. I thought you might find that interesting.

No. I had previously elected to NOT have chemotherapy because it made no sense to me to kill off everything and hope that the good came back faster than the bed.

When I first discovered Pluvicto I lobbied my oncologist for months to give me that treatment, but his hands were tied by the (then) FDA requirement that a person had to have had chemotherapy before qualifying for Pluvicto. I wanted it because, unlike chemotherapy, it was a treatment that targeted only the cancer cells. After many months of frustration on my part the requirement for chemotherapy began to loosen up. I am one of the few patients in the first wave of receiving Pluvicto without having previously had chemotherapy.