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At what point do you start Pluvicto?
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!
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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!!
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6 ReactionsOnce 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?
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