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Stage 4 Prostate Cancer and Hormone Therapy quit working

Posted by cal77 @cal77, Oct 28 12:48pm

My husband is at Stage 4 for one and a half years now...The hormone therapy (Apalutamide and Erleada) seems to have quit working. For the past 8 months, his PSA keeps climbing. It's up to 12 now..
We're scared. Anyone else got to this point? How are you doing when the hormone therapy isn't working anymore.

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jeffmarc | @jeffmarc | 1 day ago
In reply to @9036george "I too a stage 4 er (psa856)started with hormones ( lupron and Xtandi) which I’m still..." + (show)
@9036george

I too a stage 4 er (psa856)started with hormones ( lupron and Xtandi) which I’m still taking. Was effective for 9to10. Mos—kept psa in normal range , then went to 86—added a round of chemotherapy—psa been holding about 11—have started round of nuclear therapy.psa still holding. And yes for me to is a scary situation. I try to be grateful for today, hang tight with friends and family, lean on spiritual well-being. Wishing you all the very best.

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Are you planning to get Pluvicto soon? Yet can reduce the PSA Significantly in about a third of the people that get that treatment And another third get some benefit from it.

11 is still high.

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9036george | @9036george | 1 day ago

I too a stage 4 er (psa856)started with hormones ( lupron and Xtandi) which I’m still taking. Was effective for 9to10. Mos—kept psa in normal range , then went to 86—added a round of chemotherapy—psa been holding about 11—have started round of nuclear therapy.psa still holding. And yes for me to is a scary situation. I try to be grateful for today, hang tight with friends and family, lean on spiritual well-being. Wishing you all the very best.

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1 reply
melcanada | @melcanada | 2 days ago
In reply to @cal77 "My husband is otherwise healthy. He's been on Apalutamide and Eligard shots, had several bone scans..." + (show)
@cal77

My husband is otherwise healthy. He's been on Apalutamide and Eligard shots, had several bone scans and CTscans, but no PET scan and hasn't had any radiation or chemo. We see the Oncologist next week. Thank you for your help and prayers

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Ask about % od chance for PSA flair up Also % chance of fluid on lungs Pulmonary edema as well caused by chemo I got both PSA 181 from 40 from10 a year ago

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kenporter | @kenporter | 3 days ago
In reply to @northoftheborder "I'm so sorry to hear that. It's worth asking around, because some of the people in..." + (show)
@northoftheborder

I'm so sorry to hear that. It's worth asking around, because some of the people in this forum seem to have insurance that places a cap on their co-pays, so that it stops after (say) a few thousand dollars. I don't know enough about U.S. insurance to offer any concrete information, but fingers crossed that there are options available for you.

I could just afford US 920 (CAD 1,300) / month, but it would put a cramp in my family's standard of living. If I had to add an even bigger co-pay for Erleada, I don't know how we'd manage for long without burning through our retirement savings. I hope you find some better options.

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Got some great news this week regarding my cost for Orgovyx. First I was told my co pay would be $920.00 per month. Then Dana Farber took action on my behalf and somehow got a “Voucher ” for my first 30 pills and I had to pay Zero. Wow so great. And their financial department is looking into a way to reduce future cost for me. So not only is their care outstanding their help with the financial end is amazing. Started taking the Orgovyx on 12/5 and supposed to take it for 18 months. Start radiation after two months of Orgovyx. I enjoy reading the discussions from everyone. Thank you.
Ken Porter

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melcanada | @melcanada | 3 days ago
In reply to @cal77 "My husband is otherwise healthy. He's been on Apalutamide and Eligard shots, had several bone scans..." + (show)
@cal77

My husband is otherwise healthy. He's been on Apalutamide and Eligard shots, had several bone scans and CTscans, but no PET scan and hasn't had any radiation or chemo. We see the Oncologist next week. Thank you for your help and prayers

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Again Look at adding XGEVA and taking 600 MG Calcium Caltrate plus K3 + D3 and Calcium daily I also take gummy Apple Cider Vinegar

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cal77 | @cal77 | 4 days ago
In reply to @wooldridgec "I understand you are concerned. Anyone would be. Could you please share what treatments your husband..." + (show)
@wooldridgec

I understand you are concerned. Anyone would be. Could you please share what treatments your husband received upon his stage 4 diagnosis? Did he get any radiation? Did he have Chemo? Is he healthy enough for chemo? Typically what the doctors may do is schedule a PMSA Pet scan. It will light up the areas where the cancer is growing. Hopefully, it is confined to one specific area. If it is, they may suggested targeted radiation on the specific area where the cancer is growing. If the PSMA Pet scan shows several spots more spread out, they may suggest a treatment that is considered more Systemic. Those treatments may include chemo such as Docetaxil and or Carboplatin. Or they may suggested Pluvicto and or Radium 223 if the spots are limited to bone. Regardless, you should immediately request genetic and genomic testing. Genomic testing is a blood test that will show if there are any genetic markers such as BRC1, BRC2 that your doctor can act on with treatments. That is important because there are treatments that target those genetic mutations specifically. And yes, if you can, ask your doctor to switch to Nubeqa (Darolutamide). It is a wonder drug for many. Some doctor believe that once Resistance starts switching your ARSI does not work. I am not so sure about that. Xgeva is specifically for bone strength and is used to help prevent the bone loss from being on long term ADT treatment. Praying that you get the best treatment in your situation. Also Praying for you and your husband.

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My husband is otherwise healthy. He's been on Apalutamide and Eligard shots, had several bone scans and CTscans, but no PET scan and hasn't had any radiation or chemo. We see the Oncologist next week. Thank you for your help and prayers

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2 replies
melcanada | @melcanada | 5 days ago

Yesc8in 202 Dr MGovern of CVH radiated 3 cm or 1 inch out of my L2 Mono galistict then

He would not do others if need for fear of disc collapse

Now in T 5 some L4 and lower spine Nothing out side bone

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northoftheborder | @northoftheborder | 5 days ago
In reply to @melcanada "Doing Calcium citrate 20% off on seniors day ar Shoppers Drug mart Plus take K2 +..." + (show)
@melcanada

Doing Calcium citrate 20% off on seniors day ar Shoppers Drug mart Plus take K2 + D 3

Just had Xgeva injection this AM at CVH google Zgeva Fills in the pot holes wit Calcium in bones as cancer killed

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@melcanada wrote "Xgeva Fills in the pot holes with Calcium in bones as cancer killed"

They literally filled in the pothole in my spine with cement after the orthopedic surgeon "debulked" (polite for "gouged out") the lesion, because it was so big that my spine would have collapsed otherwise. I have both cement and metal rods from T1–T5 now, so it looks like I have great posture — I couldn't slouch even if I wanted to. 🙂

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melcanada | @melcanada | 5 days ago
In reply to @jeffmarc "Your body can only handle 500 mg of calcium at a time. If you can find..." + (show)
@jeffmarc

Your body can only handle 500 mg of calcium at a time. If you can find a 500 mg tablet, it would be just as good as a 600 mg. The recommendation is to take two a day at different times.

I had a pharmacist call me From Kaiser telling me that I was taking the wrong calcium and needed to take calcium citrate because it was more effective and wasn’t countered by some of the dietary and medical things I was doing.

It appears that calcium citrate is sold a little deceptively. With the calcium you get it at Costco or other places that isn’t citrate you only need to take one pill twice a day. I’ve yet to find a calcium citrate that didn’t require you to take two pills twice a day To get 500 mg each time.

Jump to this post

Doing Calcium citrate 20% off on seniors day ar Shoppers Drug mart Plus take K2 + D 3

Just had Xgeva injection this AM at CVH google Zgeva Fills in the pot holes wit Calcium in bones as cancer killed

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1 reply
jeffmarc | @jeffmarc | 5 days ago
In reply to @melcanada "Ask about Zytega and Darolutamide I also get XGEVA and Zolodex injection Take 600 MG Calcium..." + (show)
@melcanada

Ask about Zytega and Darolutamide

I also get XGEVA and Zolodex injection Take 600 MG Calcium and D2 + K3 Costco sale

Jump to this post

Your body can only handle 500 mg of calcium at a time. If you can find a 500 mg tablet, it would be just as good as a 600 mg. The recommendation is to take two a day at different times.

I had a pharmacist call me From Kaiser telling me that I was taking the wrong calcium and needed to take calcium citrate because it was more effective and wasn’t countered by some of the dietary and medical things I was doing.

It appears that calcium citrate is sold a little deceptively. With the calcium you get it at Costco or other places that isn’t citrate you only need to take one pill twice a day. I’ve yet to find a calcium citrate that didn’t require you to take two pills twice a day To get 500 mg each time.

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