Can anyone share their experience with Pluvicto?

Posted by vcash @vcash, Apr 22 8:35pm

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.

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.

REPLY
@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.

Jump to this post

Thank you for sharing this. I wish you the best for success with the treatment. I hope you do well and keep us posted with your progress.

REPLY
@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.

Jump to this post

Thank you so much for your reply. My dad has not had chemo, but the dr said she could write a letter explaining the circumstances and get it covered. We are still undecided. We have a zoom meeting tomorrow with the radiologist. Daddy's cancer first spread to his hip last May. His PSA was around 60. He took Zytiga for about 10 months with good results. His PSA came down to 3. Then it started rising and a scan showed cancer in his femur and jaw. He is now on Erleada. His PSA was 20 in early April and 16 last week. He is not a candidate for chemo. We are unsure if it is best to continue with Erleada or proceed with Pluvicto. I , too am concerned about side effects for him and for my 83 year old mom. Hopefully, our questions will be answered tomorrow. I would be interested in hearing about how your Pluvicto treatment progresses.

REPLY

76 years old in the same boat your dads in. Treatment #1 not bad at all, treatment #2 a little rough, Treatment #3 a total nightmare, Treatment #5 I didn't think I was going to survive. I don"t have a choice I'll take Treatment #5 and pray..........The rub is , everyone may have a different experience so I suggest gathering more testimonials . Pluvicto with all its unknowns is still the only game in town. If you decide to go through with the treatments you can contact me and I'll share with you some tips on how to make your dads trip easier. God Bless ,Gene

REPLY

My husband is 77 and has had three Pluvicto infusions. The fourth is scheduled for May 22. His side effects have been mild, and have not gotten worse with subsequent infusions. Every man reacts differently so your dad should not avoid Pluvicto due to fear of side effects.
He should also not worry about radiation safety. Using a Geiger counter and self isolating for extended periods are not necessary.

REPLY
@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.

Jump to this post

redroadtraveler - My experience is almost identical to yours, so far. I have had varioous treatments for 18 years (age 81), and just started on Pluvicto - also with no chemo. I am halfway between #1 and #2, and have been approved to continue. I also purchased a geiger counter from Amazon (on sale for about $50) and my findings were the same as yours. So we stay apart for a week or so, just to be safe.
My PSA actually went up from 15 to 21 after the first treatment, but am hopeful that trend will reverse in time. My most serious side effect has been fatigue - but not unbearable.
I will look forward to comparing notes as we travel farther down that road.

REPLY
@nhs61

redroadtraveler - My experience is almost identical to yours, so far. I have had varioous treatments for 18 years (age 81), and just started on Pluvicto - also with no chemo. I am halfway between #1 and #2, and have been approved to continue. I also purchased a geiger counter from Amazon (on sale for about $50) and my findings were the same as yours. So we stay apart for a week or so, just to be safe.
My PSA actually went up from 15 to 21 after the first treatment, but am hopeful that trend will reverse in time. My most serious side effect has been fatigue - but not unbearable.
I will look forward to comparing notes as we travel farther down that road.

Jump to this post

Going in to infusion number 4 next week. I think having your own dosimeter (Geiger counter) is very useful for those people who want more direct knowledge and control over what is going on for THEM, rather than simply turning themselves over to the doctor and blindly trusting the overall generic guidelines. But each to his or her own. It's your body. Will keep everyone updated as there seems to be a lot of interest in this thread.

REPLY

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.

REPLY
@eugenelapietra1

76 years old in the same boat your dads in. Treatment #1 not bad at all, treatment #2 a little rough, Treatment #3 a total nightmare, Treatment #5 I didn't think I was going to survive. I don"t have a choice I'll take Treatment #5 and pray..........The rub is , everyone may have a different experience so I suggest gathering more testimonials . Pluvicto with all its unknowns is still the only game in town. If you decide to go through with the treatments you can contact me and I'll share with you some tips on how to make your dads trip easier. God Bless ,Gene

Jump to this post

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

REPLY
@desertsky46

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.

Jump to this post

I appreciate your response. Dad had a zoom meeting last week with the doctor from nuclear medicine at Emory in Atlanta. After a consult with his oncologist, he decided to move forward with treatment and is awaiting an appointment. Daddy is becoming frail and has difficulty getting around, though he still manages to mow his lawn, garden, and do some yard work. I am sorry to hear that your pain worsened after treatment. This really concerns me for my dad. I am not sure is he strong enough to endure some of the side effects I have read about from patients. The information I have gotten from the doctors makes the side effects seem less severe than the info from patients. I will update as soon as treatment begins and would like to hear updates from other patients on this Pluvicto journey as well.

REPLY
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