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Anyone on Pluvicto? Looking for a support team

Prostate Cancer | Last Active: Apr 4 4:34pm | Replies (42)

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@lcoleman3

Hello. I joined this group yesterday and I am incredibly thankful for everyone that has shared their experiences and recommendations with the group. I can't possibly express the gratitude and relief I felt when I found this site and started reading the comments. For the first time, I didn't feel alone in this battle. I am thankful for everything I have learned.

My father has Stage IV prostate cancer and my sister and I have been struggling to understand the treatment options as his disease has progressed rapidly over the last few months. My father was diagnosed with prostate cancer at 51 years of age, which was 30 years ago. He is 81 years old now and has lead a relatively normal life for 29 of the 30 years since diagnosis. For that, we are incredibly and eternally grateful. I am so thankful for every doctor and medical professional that supported and treated him, allowing him to be present for numerous milestones in the life of our family. I have now read hundreds of posts on this site, and I am both heartbroken and inspired by the stories I've read. I pray for each patient and family that's fighting this battle.

To our great dismay, Dad's condition has changed dramatically, and his condition has deteriorated rapidly over the last few months. At this point, we can say confidently that his cancer is progressing in the face of treatment. He has traveled a difficult road since his diagnosis, but he handles each new change with an unbelievably positive attitude and a plan to move on to the next treatment option that will help him. I am coming to this group for some help and advice, and I would welcome any comments. Unfortunately, I may not be able to provide all the details of his journey because I just don't know everything. My father is a VERY private person, so many details of his treatment have been hidden from my sister and me. We didn't even make his diagnosis known to our friends and church members until about two months ago.

At the time of his diagnosis, he had a complete prostatectomy and, at that time, metastasis to regional lymph nodes was noted. He initially received hormone therapy, and radiation therapy was used many years later. About four months ago, a PSMA PET scan was performed, and metastasis was noted throughout his body, but the most prominent location was in his pelvis and lumbar spine. After that scan was performed several months ago, his oncologist recommended a more aggressive treatment protocol. Starting in early December of 2023, he began treatment with docetaxel for 15 weeks, during which time his PSA increased, and his bone metastases increased in number based on the results of another PSMA PET scan. As you can imagine, my father was devastated by the results.

Two weeks ago, my father was driving to the grocery store and doing the shopping for him and my mother. His condition has worsened dramatically due to severe pain in his lower back and right thigh as a result of metastasis. About a week to ago, he reached a point where he was screaming in pain if he tried to sit up in bed, The pain was unbearable, in his words. He was in the hospital for seven days (over the last week) so a pain management protocol could be developed for use at home. He has been back at home for two days now and we have provided full-time home health care to manage everything from medication delivery to showering and PT. Thankfully, we have a much better pain management protocol in place now and we're adjusting it as needed. As a family, we are heavily involved in every step of his treatment and therapy.

We have recently learned that Dad's oncologist has secured an appointment with the radiation oncology department at the University of Alabama at Birmingham for Dad to start treatment with Pluvicto very soon. We have an appointment on 3/26/24 for the initial consult. We have many questions and we're all very concerned about the possible side effects associated with a new treatment regimen. With that said, we know that we don't have many options at this point.

I know my father is fighting a battle he might lose, but I want to provide him with every bit of information I can to make his understanding easier. One doctor (not Dad's oncologist) told us that he must walk into the clinic for his first "Pluvicto appointment." We were told that "patients on stretchers won't be considered as reasonable candidates." So...I need to understand...what makes an ideal candidate for treatment with Pluvicto? I need to make sure I know the best way to proceed.

I'm so grateful for the opportunity to share this information with people who understand this disease and the many intricacies involved with management and treatment. Thank you.

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Replies to "Hello. I joined this group yesterday and I am incredibly thankful for everyone that has shared..."

You've pretty much described my situation except it's my left thigh thats in awful pain. For my lower back and left thigh pain I apply Australian Cream which works very quickly. If the overall pain is too great I take Dilaudid which works almost instantly so be sure you're dad is in bed when he takes it. Get your dad a walking stick , not a cane, It's almost impossible to fall with a walking stick. I used a wheel chair to go to my first visit then used my stick to go the last few feet. Do whatever you need to do to get him the Pluvicto. His bodily function are good, he has an appetite , he hasn't fallen, he's not depressed. Lie if you must but get him into the program. We have no options! They will test his blood and if his bladder and kidneys are ok , he should be good to go. Positive Thinking + family support=success. I'm getting my 4th shot 4/4. My PSA has dropped to 0.38 ! Don't be shy , if you have any questions we are happy to help you. Good Luck , Gene

Similar situation, but younger diagnoses, 2016, now 73. My Pluvicto # 3 was 02/27/24. Side effects are much less than Chemo, for me. On Chemo my PSA remained constant in the 10-11 range. My last PSA on Pluvicto was 2.3.
My concern is what comes next; at this point only one 6 treatment program is available. Things may change and additional treatments are being developed.
Hugs and prayers.