Anyone on Pluvicto? Looking for a support team

Posted by eugenelapietra1 @eugenelapietra1, Dec 19, 2023

Looking for support team going through Pluvicto.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

My psa is rising I know it will I was wondering how much other peoples have risen I’ve had two treatments,third is Wednesday they said it will level off or start falling im curious to your story thanks Dave

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@digger

My psa is rising I know it will I was wondering how much other peoples have risen I’ve had two treatments,third is Wednesday they said it will level off or start falling im curious to your story thanks Dave

Jump to this post

Hello Dave,

I'm on the Pluvicto treatment. Chose not to have chemotherapy.

Like you, I have had two Pluvicto sessions and am scheduled for my third this coming Wednesday.

I track my PSA and testosterone levels religiously.

Due to Eligard shots, my testosterone levels had been less than 10 since end of June 2023.

My PSA levels have been June 2023 10.33, July 10.24, August 10.99 rising to 19.08 at the end of August. Since PSA levels started rising, I got another Eligard shot at the end of September. My PSA at end of September was 26.77. End of October it was 39.57 and by the end of December it was 71.16. Although my oncologist disagrees, to me that said the Eligard had stopped working and I elected to discontinue any further Eligard shots. While it may have kept my testosterone levels at less than 10, it did nothing to contain or reduce my rising PSA.

I got my first Pluvicto shot at the end of December 2023 so my "starting" PSA was 71.16. by the end of January my PSA had dropped to 18.02. The first part of February I got my second pluvicto shot and my PSA was 11.81 at that point. My testosterone was still less than 10. I got more readings at the end of February and my PSA had dropped to 6.39 and my testosterone began to rise. It was 14.

Will get new reading next Monday just prior to my third Pluvicto shot on Wednesday.

So that has been my personal experience.

Robert

REPLY
@redroadtraveler

Hello Dave,

I'm on the Pluvicto treatment. Chose not to have chemotherapy.

Like you, I have had two Pluvicto sessions and am scheduled for my third this coming Wednesday.

I track my PSA and testosterone levels religiously.

Due to Eligard shots, my testosterone levels had been less than 10 since end of June 2023.

My PSA levels have been June 2023 10.33, July 10.24, August 10.99 rising to 19.08 at the end of August. Since PSA levels started rising, I got another Eligard shot at the end of September. My PSA at end of September was 26.77. End of October it was 39.57 and by the end of December it was 71.16. Although my oncologist disagrees, to me that said the Eligard had stopped working and I elected to discontinue any further Eligard shots. While it may have kept my testosterone levels at less than 10, it did nothing to contain or reduce my rising PSA.

I got my first Pluvicto shot at the end of December 2023 so my "starting" PSA was 71.16. by the end of January my PSA had dropped to 18.02. The first part of February I got my second pluvicto shot and my PSA was 11.81 at that point. My testosterone was still less than 10. I got more readings at the end of February and my PSA had dropped to 6.39 and my testosterone began to rise. It was 14.

Will get new reading next Monday just prior to my third Pluvicto shot on Wednesday.

So that has been my personal experience.

Robert

Jump to this post

Did you go directly from Eligard to Pluvicto? No 2nd generation therapies (abiraterone, apalutimide, enzalutimide, darolutamide) or chemo first?

REPLY
@digger

My psa is rising I know it will I was wondering how much other peoples have risen I’ve had two treatments,third is Wednesday they said it will level off or start falling im curious to your story thanks Dave

Jump to this post

Eligard had been an on and off thing for a couple of years. My experience with it is it knocks my testosterone down, keeps my PSA down for a few months, but is not all that effective in keeping PSA down.

I elected to not have chemotherapy as it made no sense to me to kill off everything and hope that the good came back faster than the bad.

I have had prostate cancer which has metasasized through my bones for several years and have had various treatments including aberaterone and (most recently) Keytruda. At this point everything has basically run it's course and is no longer effective and the allopathic oncologists have run out of things to try. The Pluvecto is their most recent development and so far it is working good for me. When that treatment protocol runs it's course in another five or six months they have nothing more to offer unless there are some new clinical trials which come along.

I am also doing non-fda approved protocols in addition to what the oncologist has to offer and unless there are new allopathic developments I will simply continue with them as my own personal treatment protocol.

I tried to get on the Pluvicto treatment for several months after learning about it as, unlike chemotherapy, it was directly targeting the cancer cells. I was prevented from getting it as soon as I wanted by the FDA guidelines which said a person had to have tried chemotherapy first. Further manufacturer research began to loosen up that restriction so I became one of the first people to get Pluvecto without having gone through chemotherapy.

REPLY
@digger

My psa is rising I know it will I was wondering how much other peoples have risen I’ve had two treatments,third is Wednesday they said it will level off or start falling im curious to your story thanks Dave

Jump to this post

I stopped after the 3 rd round. My PSA started out around 2.7 and ended up at 20. I said no more.

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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.

REPLY
@lag

My husband had his first Pluvicto infusion three weeks ago. By now, most of his side effects are gone. What follows is his side effect history. He had some nausea the first couple of days, but the sublingual medication Mayo prescribed made him constipated, which he hates, so he didn't take any more anti-nausea medication and took Miralax twice a day for a few days instead until the constipation eased. Luckily the nausea was mild and was gone within a few days. For a few days after the infusion, he had no appetite; by now he is hungry much of the time, but some foods don't taste quite right and others don't appeal to him at all, sohe is figuring out what to eat a day at a time. He still has some extra fatigue but has been out working in the yard a lot anyway. He has a bit of back pain after his yard work, so I am not sure if that is from the exertion or the spinal mets, but suspect it is the yard work because the pain eases when he comes inside and rests. Another note: he had his post-Pluvicto lab work (CBC and CMP) done locally yesterday. The lab faxed the results to the Kwon team at Mayo, who said his numbers are stable, meaning no worrisome effects from the first Pluvicto infusion. His second infusion is scheduled for February 28.

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Just an update: my husband had his second Pluvicto infusion on February 28 at Mayo Rochester. Everything went exactly as scheduled and the providers were great as usual. His side effects are mostly the same as after the first infusion--fatigue, appetite and taste changes, but less trouble with his bowels this time around. We learned just before the second infusion that his PSA had gone down a bit and that the volume of the cancer lesions had decreased a bit, which we took to be good news. A few days ago he had another set of post-Pluvicto lab work done locally, and the Kwon team again said his numbers are stable. So we are still scheduled for the third infusion on April 10. Hang in there, everyone.

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY
@eugenelapietra1

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

Jump to this post

Gene, thank you so much for all your helpful comments. I hope you do well with your fourth injection! I promise I will do everything in my power to get him the Pluvicto. I'm just worried about his pain level for our first consultation appointment. He will have a difficult time sitting in his wheelchair for more than a few minutes because of the pain in his lower back and right thigh. Do you think he could still be considered a good candidate if he can't stand or walk without assistance?

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