1. < Prostate Cancer

At what point do you start Pluvicto?

Posted by beaquilter @beaquilter, 6 days ago

After the FDA just approved Pluvicto WITHOUT chemo, we're wondering if my husband would qualify for Pluvicto NOW? He's only done one dose of ADT and I THOUGHT it was plummet his PSA, he had the shot 2.5weeks ago on a Friday, then Monday had his bloodwork done and PSA went down a bit maybe 20-30 points, he had lowered it himself from 250 to 200 by taking supplements and diet etc....
He has stage 4 and it's in his lungs and bones already and still the only symptoms were peeing and ED..... after the ADT his symptoms are more tiredness and less strong (he goes to the gym daily)
It was a fight to get him to take the ADT shot to begin with and the other pills that are ADT and prednisone, he was told to not even start because his liver enzymes are elevated (because of his supplements)
Anyways, I know Pluvicto is ONLY used for castration resistant PC, but at this point, how do we even know? Part of what I'm reading online says he has to be on ADT for 18-24mths or something like that and the PSA starts rising again eventually, but another part says stage 4 that's metastatic like his is castration resistant, but that's only because the stories I've read the patients got diagnosed so much earlier and started treatment, I think my husband is unique in that it's such a devastating prognosis as the initial prognosis!!
Next week before Easter, he's going in for a chest CT and bone density scan, then the next day seeing the oncologist (and I think his second ADT shot- not lupron but firmagon) -a side note I remember from my other post there were questions about firmagon why not lupron but I think it's because lupron can make the testosterone/PSA shoot up and in my husband's case, you DON'T want that.
Also he's still peeing frequently, about every hour and a half at night, but last night was the first in many nights where he went 4 hrs! - don't think it's the ADT shot that's finally working, I think we just turned off the TV earlier than normal 🙂
My husband is going to get the blood test done again BEFORE the two appointments next week, so at least we can see his PSA and liver enzymes and at least him and I can THINK about stuff.
I feel so lonely and desperate, the doctors gave us/me hope of several years with treatment, but maybe it's just a money making scheme, my husband and I distrusts hospitals and doctors SO much, though I'm at my breaking point where I want to just give up and do what they say, my husband doesn't....so without treatment he probably has a year left!

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

jeffMar | @jeffmarc | 6 days ago

Once your husband has been on any ADT drug, Lupron will not cause a flare. There is no reason he should go on Firmagon. It has the most side effects of any of the drugs because it causes problems where it is injected. It also must be given every month, A painful situation for many of the people using it.

You should TELL your doctor you do not want Fermagon you want Orgovyx, The once daily pill that works just as well as Lupron or Fermagon. I really think that the reason they give Firmagon is because the doctor can then charge once a month for the shot. With Lupron you can get a three or six month shot. You don’t have to see him very often, A nurse always gave me the shot, Didn’t see the urologist for years, My GU Oncologist was responsible for all the other drugs I needed, except drugs exclusively urinary system related.

I can’t say for sure, but I suspect he would be a good candidate for pluvicto. The only problem may be that they would want him on ADT and Zytiga for a while to see if that prevents the cancer from growing. If your husband’s PSA does not become undetectable, then you need to discuss with your doctor whether Pluvicto makes sense since he’s not responding fully to the drugs (that’s called castrate resistant, Something you were discussing).

If he is on Zytiga and has serious fatigue problems, he needs to talk to his doctor about raising his prednisone from 5 mg to 10 mg. Many doctors use 10 mg to start off with, it is one of the recommended medication doses. I mentor people with prostate cancer through Imerman Angels. My most recent mentee was having serious fatigue problems, He would wake up and then need to go back to sleep for hours. I told him to ask his doctor to increase his prednisone, Which he did, and his fatigue problem is dramatically improved. A couple of weeks after this happened I was watching a PC webinar where a doctor with prostate cancer was talking about his problems with fatigue. He increased his prednisone from 5 mg to 7 1/2 and it worked well. In his case, however, it caused him to have high blood sugar (Prediabetic) And he had to go back to 5 mg. This is not happened with my mentee.

With the condition your husband is in a CT and bone scan is absolutely Anachronistic. You just want a PSMA PET scan, which includes a CT scan at the same time., That has replaced the CT and bone scan. This has been discussed in a few of the webinars that have been available in the last couple of years. Talk to your doctor about this and ask why the PSMA pet scan would not be better. Is it just an issue of cost?

REPLY
1 reply
beaquilter | @beaquilter | 6 days ago
In reply to @jeffmarc "Once your husband has been on any ADT drug, Lupron will not cause a flare. There..." + (show)
@jeffmarc

Once your husband has been on any ADT drug, Lupron will not cause a flare. There is no reason he should go on Firmagon. It has the most side effects of any of the drugs because it causes problems where it is injected. It also must be given every month, A painful situation for many of the people using it.

You should TELL your doctor you do not want Fermagon you want Orgovyx, The once daily pill that works just as well as Lupron or Fermagon. I really think that the reason they give Firmagon is because the doctor can then charge once a month for the shot. With Lupron you can get a three or six month shot. You don’t have to see him very often, A nurse always gave me the shot, Didn’t see the urologist for years, My GU Oncologist was responsible for all the other drugs I needed, except drugs exclusively urinary system related.

I can’t say for sure, but I suspect he would be a good candidate for pluvicto. The only problem may be that they would want him on ADT and Zytiga for a while to see if that prevents the cancer from growing. If your husband’s PSA does not become undetectable, then you need to discuss with your doctor whether Pluvicto makes sense since he’s not responding fully to the drugs (that’s called castrate resistant, Something you were discussing).

If he is on Zytiga and has serious fatigue problems, he needs to talk to his doctor about raising his prednisone from 5 mg to 10 mg. Many doctors use 10 mg to start off with, it is one of the recommended medication doses. I mentor people with prostate cancer through Imerman Angels. My most recent mentee was having serious fatigue problems, He would wake up and then need to go back to sleep for hours. I told him to ask his doctor to increase his prednisone, Which he did, and his fatigue problem is dramatically improved. A couple of weeks after this happened I was watching a PC webinar where a doctor with prostate cancer was talking about his problems with fatigue. He increased his prednisone from 5 mg to 7 1/2 and it worked well. In his case, however, it caused him to have high blood sugar (Prediabetic) And he had to go back to 5 mg. This is not happened with my mentee.

With the condition your husband is in a CT and bone scan is absolutely Anachronistic. You just want a PSMA PET scan, which includes a CT scan at the same time., That has replaced the CT and bone scan. This has been discussed in a few of the webinars that have been available in the last couple of years. Talk to your doctor about this and ask why the PSMA pet scan would not be better. Is it just an issue of cost?

Jump to this post

he already had the PSMA PET scan and it showed so much, numerous lesions in lungs, bones, hips, pelvis, spine, shoulder bones etc....
I think that's why they're doing the bone density test too at least to get a beginning start point, the chest CT scan I think is for the lungs and more details of how far it's progressed. He has a slight cough constantly, but not like a cold cough nor like a COPD cough, just a little AHEM cough.. but every few minutes!
He has the ADT pills (Zytiga I believe) and prednisone here but is told not to take them because of the liver enzymes going up (because he's taking his own supplements- he's not telling them which because they'll probably stop offering treatment) then again I argue that we SHOULD tell them, since he's not listening to them anyways.
Part of me trusts the doctors at UNC, part of me doesn't... I think my husband is so far gone that he'll die soon anyways! I've given up on the fighting!! My husband is being fickle about it all, one day he says reluctantly yes, the next day it's a hard no! I completely lost my cool before he took the shot because he wasn't going to do it, I yellow and threw a chair around and have a few dents in my wall now (in my studio upstairs, where he rarely goes)
If you can find my older posts, that gives more insight to what we've been thru since February!
It was really just a doctor visit for an enlarged prostate, that turned into high PSA, 250 or 300, I can't remember now without looking, then pelvic CT scan that showed it outside prostate, urologist, then biopsy with gleason group scores of all 8 and 9s! then PSMA scan that showed all the above.....each test is worse and worse..... now his liver numbers are high (though we think it's his supplements)
I think the days for playing with supplements are too late now, now it needs to be aggressive and right NOW!
Add to that we have 4 children 22 down to 9 years old, my husband lost his job a year ago, then his parents got ill and passed away in the fall, after we/him took take of them full time, my best friend was in the hospital right after that for over 100 days! then this, then my mom died 2 weeks ago and my 20yo daughter and her boyfriend broke up last week..... I'm mentally exhausted!! I know God provides, but geesh!! enough already!! I don't want to be a widow too soon!! I already have my inlaws ashes in the closet, soon to add my mom's, I really don't want a 4th! I don't want to start THAT kind of collection!!

REPLY
4 replies
northoftheborder | @northoftheborder | 6 days ago

The PSA will fluctuate anyway, so a one-time change from 250 to 200 probably doesn't mean anything, unfortunately (probably unrelated to any dietary changes or supplements he's tried). They want to see a steady downwards trend towards undetectable (effectively, zero) over a period of time.

My PSA did come down quickly from the high 60s to 20 to 0 over about 3 months after I started on ADT and Apalutamide (a -lutamide is a very powerful complement to ADT), but that doesn't always happen. Given his polymetastatic cancer, I'd think your husband could make a strong case for triplet therapy at this point (including chemo), and maybe Pluvicto as well, but I'm not a medical professional.

This is the time to push push push — it's not rude to ask his onco team questions like "why?" "why not?" "what if?" "what's next?" "are there any alternatives?" and so on (respectfully, of course, but also insistently).

REPLY
northoftheborder | @northoftheborder | 6 days ago
In reply to @beaquilter "he already had the PSMA PET scan and it showed so much, numerous lesions in lungs,..." + (show)
@beaquilter

he already had the PSMA PET scan and it showed so much, numerous lesions in lungs, bones, hips, pelvis, spine, shoulder bones etc....
I think that's why they're doing the bone density test too at least to get a beginning start point, the chest CT scan I think is for the lungs and more details of how far it's progressed. He has a slight cough constantly, but not like a cold cough nor like a COPD cough, just a little AHEM cough.. but every few minutes!
He has the ADT pills (Zytiga I believe) and prednisone here but is told not to take them because of the liver enzymes going up (because he's taking his own supplements- he's not telling them which because they'll probably stop offering treatment) then again I argue that we SHOULD tell them, since he's not listening to them anyways.
Part of me trusts the doctors at UNC, part of me doesn't... I think my husband is so far gone that he'll die soon anyways! I've given up on the fighting!! My husband is being fickle about it all, one day he says reluctantly yes, the next day it's a hard no! I completely lost my cool before he took the shot because he wasn't going to do it, I yellow and threw a chair around and have a few dents in my wall now (in my studio upstairs, where he rarely goes)
If you can find my older posts, that gives more insight to what we've been thru since February!
It was really just a doctor visit for an enlarged prostate, that turned into high PSA, 250 or 300, I can't remember now without looking, then pelvic CT scan that showed it outside prostate, urologist, then biopsy with gleason group scores of all 8 and 9s! then PSMA scan that showed all the above.....each test is worse and worse..... now his liver numbers are high (though we think it's his supplements)
I think the days for playing with supplements are too late now, now it needs to be aggressive and right NOW!
Add to that we have 4 children 22 down to 9 years old, my husband lost his job a year ago, then his parents got ill and passed away in the fall, after we/him took take of them full time, my best friend was in the hospital right after that for over 100 days! then this, then my mom died 2 weeks ago and my 20yo daughter and her boyfriend broke up last week..... I'm mentally exhausted!! I know God provides, but geesh!! enough already!! I don't want to be a widow too soon!! I already have my inlaws ashes in the closet, soon to add my mom's, I really don't want a 4th! I don't want to start THAT kind of collection!!

Jump to this post

@beaquilter - it sounds like a brutal time for both of you. There's nothing that will make it better right now, but make sure you keep taking care of yourself. Going to a coffee shop for an hour every day (for example) will give your body a chance to come down from crisis mode and heal a bit, even if you end up just staring out the window as your coffee gets cold.

And it's ok to post about yourself here, not just about your husband. We're here for both of you. ❤️

REPLY
jeffMar | @jeffmarc | 6 days ago
In reply to @beaquilter "he already had the PSMA PET scan and it showed so much, numerous lesions in lungs,..." + (show)
@beaquilter

he already had the PSMA PET scan and it showed so much, numerous lesions in lungs, bones, hips, pelvis, spine, shoulder bones etc....
I think that's why they're doing the bone density test too at least to get a beginning start point, the chest CT scan I think is for the lungs and more details of how far it's progressed. He has a slight cough constantly, but not like a cold cough nor like a COPD cough, just a little AHEM cough.. but every few minutes!
He has the ADT pills (Zytiga I believe) and prednisone here but is told not to take them because of the liver enzymes going up (because he's taking his own supplements- he's not telling them which because they'll probably stop offering treatment) then again I argue that we SHOULD tell them, since he's not listening to them anyways.
Part of me trusts the doctors at UNC, part of me doesn't... I think my husband is so far gone that he'll die soon anyways! I've given up on the fighting!! My husband is being fickle about it all, one day he says reluctantly yes, the next day it's a hard no! I completely lost my cool before he took the shot because he wasn't going to do it, I yellow and threw a chair around and have a few dents in my wall now (in my studio upstairs, where he rarely goes)
If you can find my older posts, that gives more insight to what we've been thru since February!
It was really just a doctor visit for an enlarged prostate, that turned into high PSA, 250 or 300, I can't remember now without looking, then pelvic CT scan that showed it outside prostate, urologist, then biopsy with gleason group scores of all 8 and 9s! then PSMA scan that showed all the above.....each test is worse and worse..... now his liver numbers are high (though we think it's his supplements)
I think the days for playing with supplements are too late now, now it needs to be aggressive and right NOW!
Add to that we have 4 children 22 down to 9 years old, my husband lost his job a year ago, then his parents got ill and passed away in the fall, after we/him took take of them full time, my best friend was in the hospital right after that for over 100 days! then this, then my mom died 2 weeks ago and my 20yo daughter and her boyfriend broke up last week..... I'm mentally exhausted!! I know God provides, but geesh!! enough already!! I don't want to be a widow too soon!! I already have my inlaws ashes in the closet, soon to add my mom's, I really don't want a 4th! I don't want to start THAT kind of collection!!

Jump to this post

I read too fast and saw bone density scan and thought bone scan, which is usually combined with a CT that you mentioned.

Some supplements can duplicate what some of the ADT drugs can do, and can mess up your blood test results The fact is, there’s almost no supplements that are going to benefit him other than calcium, vitamin D, and maybe B12 or a multivitamin. Some people get so hooked up in these vitamin theories that they don’t face the fact that they really aren’t helping.

This is a matter of life or death, We have an advanced case and he needs to get on the proper drugs right away. Dropping those vitamins and getting his liver Enzymes back to normal is really critical for his future, survival. He has a serious case he needs to get moving. The doctors are not trying to deceive you. Your husband needs these drugs they’ve given you right away to stop the cancer from growing and try to get it to shrink some. The more you read in this forum the more you will see that people are getting the same sort of treatment choices as you are getting.

Has he become depressed by this? Does he not want to face it and not willing to really address the issues? He may need an antidepressant for a little while. This is not unusual, Somebody was just mentioning a few days ago, that they started Zoloft and it made a difference completely changed their whole World view. There are other drugs, you need to really get something done on this, find out why he’s reticent to do anything.

I would imagine all of the things going on in your families are part of the problem. I hope you get some help for his reticence to do what is needed, ,you have young kids at home. You want to get this treated you want him living as long as possible.

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beaquilter | @beaquilter | 6 days ago

It could be a bone scan....I don't remember.

REPLY
michaelbryan6998 | @michaelbryan6998 | 6 days ago

I"m 79, have castrate resistant metastacised cancer, did chemo, Lupron, targeted radiation to the prostate, and now I've had one injection of Pluvicto. My PSA was 1.08 in November 24, in January 25 was up to 2.11 and Doc said "Pluvicto time.' I'm not sure it was necessary based on PSA - scan showed cancer growth in bones and spine, so my wife and I decided to trust God to work thru the doctors (we've done that for this almost 5 year battle) and take the Pluvicto. I will say, after almost 3 weeks, my 'tiredness' has definitely increased. That said, my Oncologist has me on small dose of Prednizone (5 mg) and I take Adderall (10 mg) which REALLY gave me back my life in terms of energy. Still no strength and I have lung issues also, but I'm a fan of Adderall.

Best advice: choose life, talk openly and honestly with your docs, ask lots of questions till you get answers, and don't be afraid to get a second opinion or even change docs (we did) if the relationship is purely textbook. My two best oncologists actually CARE ABOUT ME and want whats best, not just to prescribe whats textbook. My wonderful wife of 43 years is my go0-to PA for all my information - she's a trooper and while we have some thoughts about my dying, its not in our faces daily and we are living life. Hope some of this helps. Prayer is a good thing too - God is able !!

REPLY
dailyeffort | @dailyeffort | 5 days ago
In reply to @beaquilter "he already had the PSMA PET scan and it showed so much, numerous lesions in lungs,..." + (show)
@beaquilter

he already had the PSMA PET scan and it showed so much, numerous lesions in lungs, bones, hips, pelvis, spine, shoulder bones etc....
I think that's why they're doing the bone density test too at least to get a beginning start point, the chest CT scan I think is for the lungs and more details of how far it's progressed. He has a slight cough constantly, but not like a cold cough nor like a COPD cough, just a little AHEM cough.. but every few minutes!
He has the ADT pills (Zytiga I believe) and prednisone here but is told not to take them because of the liver enzymes going up (because he's taking his own supplements- he's not telling them which because they'll probably stop offering treatment) then again I argue that we SHOULD tell them, since he's not listening to them anyways.
Part of me trusts the doctors at UNC, part of me doesn't... I think my husband is so far gone that he'll die soon anyways! I've given up on the fighting!! My husband is being fickle about it all, one day he says reluctantly yes, the next day it's a hard no! I completely lost my cool before he took the shot because he wasn't going to do it, I yellow and threw a chair around and have a few dents in my wall now (in my studio upstairs, where he rarely goes)
If you can find my older posts, that gives more insight to what we've been thru since February!
It was really just a doctor visit for an enlarged prostate, that turned into high PSA, 250 or 300, I can't remember now without looking, then pelvic CT scan that showed it outside prostate, urologist, then biopsy with gleason group scores of all 8 and 9s! then PSMA scan that showed all the above.....each test is worse and worse..... now his liver numbers are high (though we think it's his supplements)
I think the days for playing with supplements are too late now, now it needs to be aggressive and right NOW!
Add to that we have 4 children 22 down to 9 years old, my husband lost his job a year ago, then his parents got ill and passed away in the fall, after we/him took take of them full time, my best friend was in the hospital right after that for over 100 days! then this, then my mom died 2 weeks ago and my 20yo daughter and her boyfriend broke up last week..... I'm mentally exhausted!! I know God provides, but geesh!! enough already!! I don't want to be a widow too soon!! I already have my inlaws ashes in the closet, soon to add my mom's, I really don't want a 4th! I don't want to start THAT kind of collection!!

Jump to this post

So sorry to hear that there are so many tough issues that you and your family are having to navigate all at once. You have received some excellent thoughts from others on this thread already. Some additional support is available in the form of patient and family services at UNC medical centers that might be helpful to you and your husband in a number of different ways. If you would like to share which UNC campus you are being seen at, I will find and post the links you can use to get connected to the services available at that campus.
Best wishes to you, your husband and children on this journey. We are here for you.
Bill

REPLY
1buffster1 | @1buffster1 | 5 days ago
In reply to @beaquilter "he already had the PSMA PET scan and it showed so much, numerous lesions in lungs,..." + (show)
@beaquilter

he already had the PSMA PET scan and it showed so much, numerous lesions in lungs, bones, hips, pelvis, spine, shoulder bones etc....
I think that's why they're doing the bone density test too at least to get a beginning start point, the chest CT scan I think is for the lungs and more details of how far it's progressed. He has a slight cough constantly, but not like a cold cough nor like a COPD cough, just a little AHEM cough.. but every few minutes!
He has the ADT pills (Zytiga I believe) and prednisone here but is told not to take them because of the liver enzymes going up (because he's taking his own supplements- he's not telling them which because they'll probably stop offering treatment) then again I argue that we SHOULD tell them, since he's not listening to them anyways.
Part of me trusts the doctors at UNC, part of me doesn't... I think my husband is so far gone that he'll die soon anyways! I've given up on the fighting!! My husband is being fickle about it all, one day he says reluctantly yes, the next day it's a hard no! I completely lost my cool before he took the shot because he wasn't going to do it, I yellow and threw a chair around and have a few dents in my wall now (in my studio upstairs, where he rarely goes)
If you can find my older posts, that gives more insight to what we've been thru since February!
It was really just a doctor visit for an enlarged prostate, that turned into high PSA, 250 or 300, I can't remember now without looking, then pelvic CT scan that showed it outside prostate, urologist, then biopsy with gleason group scores of all 8 and 9s! then PSMA scan that showed all the above.....each test is worse and worse..... now his liver numbers are high (though we think it's his supplements)
I think the days for playing with supplements are too late now, now it needs to be aggressive and right NOW!
Add to that we have 4 children 22 down to 9 years old, my husband lost his job a year ago, then his parents got ill and passed away in the fall, after we/him took take of them full time, my best friend was in the hospital right after that for over 100 days! then this, then my mom died 2 weeks ago and my 20yo daughter and her boyfriend broke up last week..... I'm mentally exhausted!! I know God provides, but geesh!! enough already!! I don't want to be a widow too soon!! I already have my inlaws ashes in the closet, soon to add my mom's, I really don't want a 4th! I don't want to start THAT kind of collection!!

Jump to this post

I feel your frustration. My husband finished his pluvicto treatment last September
All was well until yesterday. His psa shot up to over 200. And another treatment called xofigo will be administered
His treatment was standard.
First zytiga then nubeca, pluvicto and noe xofigo.

We love our husbands and we are usually their best advocates
Take care of your self and prayer and taking vate of yourself is key. Stress will cause more harm on yourself.
If any others have gone through this regiment of drugs, could you share your experiences.

REPLY
2 replies
jeffMar | @jeffmarc | 5 days ago
In reply to @1buffster1 "I feel your frustration. My husband finished his pluvicto treatment last September All was well until..." + (show)
@1buffster1

I feel your frustration. My husband finished his pluvicto treatment last September
All was well until yesterday. His psa shot up to over 200. And another treatment called xofigo will be administered
His treatment was standard.
First zytiga then nubeca, pluvicto and noe xofigo.

We love our husbands and we are usually their best advocates
Take care of your self and prayer and taking vate of yourself is key. Stress will cause more harm on yourself.
If any others have gone through this regiment of drugs, could you share your experiences.

Jump to this post

Xofigo Is commonly used when somebody has a lot of bone mets. It is the radium 223 treatment which is used in bone mets cases.

Hopefully it can help resolve some of the bone mets that he has.

Bone Mets should be zapped with SBRT but if there are too many Xofigo is a better choice.

Pluvicto can be used a second time. After Xofigo it might make sense. In Australia it is a pretty common treatment.

Have you had genetic testing?? Some people’s somatic tests (on blood or tissue) Have actually shown they have genetic issues like BRCA2 or ATM. That allows them to use a PARP Inhibitor, which can keep the cancer controlled.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done FREE with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

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